December29TH 2007-January 8th 2008
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From a listmate up NORTH
Pray for snow!!!
Rainbow Country Snowmobile Association
Volunteer President & General Manager: Dennis Lendrum
182 Syroid St Espanola, ON P5E 1G4
705-869-0164 Cell 705-869-9135 email: dennis@rcsasnow.com
Secretary Treasurer: Betty Heis
R.R. 1, Site 12, Comp 11, Mindemoya, ON P0P 1S0
Phone/Fax: 705-377-5158 email: betty@rcsasnow.com
Visit our Website at www.rcsasnow.com
I am very pleased that the 5 clubs within RCSA have agreed to name the new long weekend in February as “Autism Awareness Ride Weekend”
We will be offering a guided snowmobile tour to anybody that wants to participate. “Bring your cameras”
The ride will start Saturday February 16th, 2008 (9am) at the Pinewood Motor Inn (705) 869-3460 in Espanola Ontario.
We will ride through the LaCloche Mountains to Manitoulin Island for lunch, and then we will ride to Killarney for dinner and a night of relaxation at the Killarney Bay Inn. (705) 287-2011
Sunday we will ride to some of the fantastic sightings in the Killarney area and back to the Killarney Bay Inn for dinner and a night of relaxation.
Monday February 18th, 2008 we will leave the Killarney Bay Inn at (9am) and ride back to Espanola (Pinewood Motor Inn) for 1 pm.
Book your rooms early, as the motels will fill up fast.
Please confirm your intent, as I need to make lunch reservations.
Yours in Safe Snowmobiling Always
There is nothing Stronger than the Heart of a Volunteer
Dennis Lendrum
From a listmate
December 24, 2007 THE TORONTO STAR (ONT) PAGE: AA08 (OPINION)
From sea to sea to sea, a model for the world
Deborah Coyne
What does it mean to be Canadian when we come from everywhere?
How do we forge a shared national purpose among people who have never shared anything before?
The world is coming to Canada. More and more Canadians are global citizens, exploring the world or staying connected to our countries of origin more instantly, more easily and more inexpensively than ever before.
We are Canadians without borders, looking outward to an exciting future. We have come together from every corner of the globe to continue to build a progressive, vigorous, multi-ethnic democracy that is unique in human history. We want to embrace the national responsibilities that have been thrust upon us because of our unique place in the international community.
Our destiny is to show that Canada can be a model for a troubled world increasingly challenged by religious and sectarian friction, and environmental catastrophes. Our growing diversity as a people, our huge pool of human talent, is our greatest strength from which to forge a clear, national purpose.
We need bold and visionary national leadership to inspire us to confidently take on the world and convey a sense of forward motion.
We need national leadership that inspires Canadians once again to believe that those in public life can translate rhetoric into action. We need a national government that governs for the Canadian people, not the provincial premiers, and that brings forward initiatives with clarity and conviction.
Here are some examples of what such leadership could achieve:
We need a vigorous national commitment to establish the best public education system in the world. Among other things, this should mean:
Child care, including early childhood education, available in the schools (elsewhere as necessary) from the age of 3.
Enhanced parental leave to permit one parent to stay home with children for at least the early years of a child's life.
No public funding for faith-based schools and a curriculum that includes serious study of religions of the world.
Funding to ensure that there is a teacher's assistant in every classroom.
Schools open in the evening and serving as community hubs.
Assured access to the full range of post-secondary education to all qualified students.
We must once and for all devote the attention and resources necessary to put an end to Third-World conditions among aboriginal Canadians.
We must likewise take all necessary steps to achieve equality of opportunity for all Canadians in practice, not just in theory. We must solve the foreign credentials problem that has deeply hurt so many new Canadians, and provide adequate infrastructure to help new Canadians maximize their potential through language training, settlement services and internship programs that provide work experience.
We must also establish wage security to enhance the employment insurance of those whose jobs are displaced by global forces, and take much more effective steps to eliminate poverty and unemployment.
We should have true national standards for medicare, with a commission at the national level establishing what services should be necessary for all Canadians, from autism therapy to physiotherapy.
As important as it is that we find cures to the diseases affecting Canadians, we must also take much more aggressive national action against environmental causes of ill health and disease, such as by identifying and eliminating the toxic chemicals and pesticides to which Canadians are exposed daily.
The time is long overdue for the national government to:
Put an end to the costly, wasteful barriers to trade among provinces.
Create a single national securities regulator.
Take firm steps to make Canada the greenest country on the planet, with a minister of the environment on a par with the minister of finance.
We can start by putting a price on carbon and introducing a carbon levy on polluting activities, including a levy on gas at the pump. This will provide substantial dedicated funding for a wide range of initiatives designed to increase energy efficiency and conservation, and develop new sources of clean, renewable energy, including a national electricity grid. The additional revenues can contribute to a reduction in personal income taxes and ensure that business and investment taxes remain competitive.
The time is also long overdue for a well-funded national infrastructure program to help establish public transit, new sewers, safe water supplies, and ensure repairs to existing bridges, roads and railways.
Finally, almost every aspect of our daily lives has a global dimension. All the serious challenges we face - whether climate change, dreadful poverty, wars, sicknesses, nuclear proliferation, terrorism - require global co-operation and decisive national leadership.
With clear global vision and bold national leadership, Canadians are uniquely positioned to be in the front ranks of a world without borders.
Deborah Coyne is a Toronto-based policy analyst and consultant, and ran as a Liberal party candidate in the 2006 general election. deborahcoyne.ca.
A repeat article, very good one
Monday, Dec. 24, 2007
Autistic Kids: The Sibling Problem
By Amy Lennard Goehner
A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and "typical." And I'm the parent — most of the time. Before we got to the store, Joey said to me, "If Nate has a tantrum, I can handle him. You just focus on buying shoes. I'm better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense."
None taken. He's absolutely right.
The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.
A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."
At a recent Sibfun workshop at the Jewish Community Center on Manhattan's Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.
Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).
There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.
Challenge #1: "Why won't he play with me?"
For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won't play. "The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact," says Rutgers' Harris.
Seven-year-old Adam, whose autistic brother Jacob is 11, says, "I can't really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn't want to play." Adam's father, Paul, says soberly, "I'm sure Eric represents the brother Adam might have had."
Solution: Find common ground
Parents can start by telling the typical sibling that his brother or sister "is doing the best he can, and here are some things you can do with him," says Judy Levy, director of social work at the Kennedy Krieger Institute. "Maybe in the future he'll be able to learn to play with you in other ways, but right now this is what he can do."
Harris encourages parents to "find ways in which the siblings can relate [or] share an interest." That can be something very simple, as Elliot learned at an early age. "It turns out my brothers [Benjamin and Aaron] are really ticklish," says Elliot. "Tickling was a good way to bond with them, and for them to show affection back by laughing and wanting it again." (And again and again — and again.)
Challenge #2: "It's not fair!"
Every parent has heard his or her child say, "It's not fair!" But for families with autistic and typical siblings, "not fair" is the reality, when it comes to one child being treated differently from the other. Martin Bounds has one autistic child, Charlie, 13, and one typical child, Alex, 15, about whom Bounds says, "He'd get very upset when he would bump his knee or complain of feeling sick. He thought we weren't sufficiently concerned about him, in the spirit of 'I could be over here dying, and all you care about is Charlie.'"
That may be overstatement, but such sentiments often stem from legitimate gripes. Bounds recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. "Alex won the race for his age group and was really upset when we were not there to greet him at the finish line," says Bounds. "As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful."
Solution: Create special time
Harris urges parents to set aside alone-time with their typical kids every week. "Private time can even [include] riding in the car to pick up the laundry," she says, "but since [the child is] with Daddy, [he or she is] the focus of his attention."
Some kids, like Elliot, develop new hobbies as a way to spend time with a parent. "Gardening was something I could do with just my mom — it was never easy to get my mom to myself," he says. Elliot began gardening five years ago; he's now a junior judge at flower shows and grows about 330 varieties at home, including the 170 seedlings he has hybridized.
For single parents, however, eking out one-on-one time can be a daunting task. As a widowed mom, I know firsthand — we do the best we can with the time we have. Single dad Ron Barth says his autistic 9-year-old, Daniel, "dominates everything, so I have to make special moments with Nicole [age 15], like taking her shopping — without Daniel." But, says Barth, "There aren't enough of those moments."
Challenge #3: "I'm scared!"
Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can't possibly keep an eye on their kids every second — which is about the amount of time it took for one child I interviewed to get squirted in the eyes with Windex by her younger autistic brother. (She survived just fine.) Even my son Nate, who isn't aggressive but is twice the size of Joey, often hugs Joey — tight. Very tight. Around the neck. When Joey yells "MOM!" I've learned to tell the difference between Mom, can you help me find my Gameboy? and MOM, he's choking me!
Solution: Find a safe haven
"I tell parents to have a 'safe place,' usually the child's room, where the typical child can go while an adult handles the behavior problem," says Harris. "Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened."
Harris also suggests that parents develop an "intervention plan" to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. "Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves," says Harris.
Challenge #4: "He's so embarrassing!"
It's common for siblings to feel embarrassed by their autistic brother or sister's behavior in public, or to be reluctant to bring their friends home. Kelly Reynolds, 21, says it can be difficult introducing her autistic brother, Will, to her friends: "It's hard to have a young child in an older kid's body. [Will] may go up to one of my girlfriends and sit on her on the couch — which probably would have been cute when he was five years old but he's 17 now," Reynolds says. "That can be hard because you can tell when someone feels awkward or scared or thrown off."
Solution: Encourage honesty — and laugh
"Interestingly, a lot of these [typical sibs] are more outspoken," says Levy of the Kennedy Krieger Institute. "They'll go up to people and say, 'Yes, that's my brother. He has special needs. Do you have any questions?'"
My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey's friend started making fun of Nate, Joey got right in her face and said, "Do NOT make fun of my brother again! Everybody learns differently." They were my words coming from Joey's mouth.
Several parents I interviewed said a sense of humor is key. "Your typical child can see the humor in the actions of his autistic siblings," says Bounds, father to Charlie and Alex. "It's okay to talk about his or her 'weird brother' in a way that signals that you both know this isn't normal."
When Nate does something bizarre in public, which is just about whenever he's in public, Joey and I often give each other an Oh, my God! look and roll our eyes, which sort of says, "We're in this together."
Challenge #5: "I feel like the parent."
Angela Bryan-Brown, 15, says she often feels like a parent to her 14-year-old brother Alasdair. "You don't have a choice," says Angie. "You've got to help out, and your parents can only do so much. They're so stressed out." Angie's mom Florie Seery refers to Angie as "the third parent in the house" and "an old soul," a phrase I've heard often from other parents.
Elliot says of his siblings' disorder: "Even though I'm four years younger, it places me in the position of being the older brother. "
Solution: Let sibs be children too
"It's a challenge for children to feel that sense of responsibility for their sibling," says Harris. "A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she's not a parent."
For young siblings, Harris suggests counseling them: "'It's wonderful to care about your brother, but you're my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you're not his mommy or daddy. We will take care of him when he needs help.' That kind of message reaffirms one's love and lifts that burden."
Challenge #6: The holidays
"Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems," says Dr. Raun Melmed of the Southwest Autism Research and Resource Center. "Of course, when the child gets overwhelmed and melts down, so do the siblings and parents."
"In short, holidays suck, especially the ones you spend outside your own home," says dad, Bounds. "They're full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law's cat by the throat and is about to put him in the food processor."
Solution: Ask family members to help
Harris suggests that parents "create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren't trapped, and the child doesn't have to be exposed to the chaos of the party. Cousins and aunts can take a turn."
Siblings, however, should be spared. "The typically developing kid wants the holiday to come. She's off from school, she's getting her present and she can't really enjoy that" if she's expected to take care of her autistic brother or sister, says social worker Snyder-Vogel.
Challenge #7: In adulthood, the sibs will become "parents"
Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. "You're basically at some point going to be their parent," says Kelly Reynolds, 21. "Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. ... For me, it's kind of a deal-breaker when someone can't really get along with my brother. He's such a big part of my life."
Solution: Discuss future plans with adult children
Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, says Harris in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
Many of the children I interviewed showed deep concern for their autistic brothers and sisters. And nearly all of the professionals and doctors I talked with said that a disproportionate number of their students and residents were siblings of people with autism. "I'm very interested in trying to help find a cure," says 15-year-old Elliot, who closely follows news about the disorder. "I'd just like to get a neat little pill someday for my siblings that they can pop in with their apple juice and hopefully be normal."
Grandparents of grandchildren with disabilities need support too
Wednesday, January 02, 2008 -- Natalie Miller
Initially when grandparents learn their grandchild has a disability, they “grieve twice”, once for their child and again for their grandchild, a social worker says.
Later, their outlook becomes hopeful and they realize how grand-parenting a child can enrich their lives, says Barb Juett, an employee of the Ottawa Children’s Treatment Centre (OCTC).
That’s why the children’s treatment centre for kids with special needs developed sessions specifically catering to grandparents.
“We know that it’s a need because (parents) receive support from their extended family,” says Juett.
“It has been very well-received,” says Juett of the grandparent workshops. The most recent session was held Nov. 17 and workshops are offered twice a year. The registration is capped at 18 and the criterion for attendance is the grandchild must be a client of OCTC between the ages of birth and eight years old.
The goals of the workshop are to provide the opportunity for grandparents to meet with other grandparents to discuss and share concerns, to learn about programs and services available to their grandchildren and to discuss helpful strategies that enable grandparents to be supportive to their children and their families.
“The idea of developing grandparent workshops at OCTC isn’t new,” says Juett, noting the need was identified back in 1995. However, these sessions are different because they’re more informal. She says grandparents attending the sessions generally want to know more about their grandchild’s diagnosis and what kind of support their grandchild should be receiving and whether the family can access funding for services.
They also want to know how they can help. “Some grandparents are reluctant to get involved and others are over-involved,” she says. “Grandparents these days are very motivated,” she says. “They want to establish the balance.”
In some cases, where the grandchild has high medical needs, some grandparents aren’t comfortable caring for them alone. As a result, there can be associated guilt. Staff make suggestions like supporting the parents by preparing meals, for instance, to be of assistance.
Juett, and her colleague, Julie Abgrall-Cowan, have compiled the following tips for grandparents:
• Permit yourself time to go through the same grieving process as your child. Grandparents often grieve twice: once for their child and once for their grandchild.
• Seek current and accurate information about the diagnosis. Reliable information eases some of the fears about the child’s condition.
• Be a good listener for the child’s parents. Remember not to minimize your child’s concerns.
• Communicate your feelings without trying to take over. If you are uncomfortable with your grandchild but want to help, ask the parents to think of other ways you can support the family.
• Reassure the parents that you are available should they need you, then back off and allow them some time.
• Show equal concern for each of your grandchildren if you have more than one. Playing favourites hurts everyone.
• Be honest if you are uncomfortable interacting with the child. Your grandchild may be stressful to supervise. Admit when emotions are frazzled.
• If possible, be a part of your grandchild’s development. If you live nearby, offer to accompany the child to therapy and learn techniques that are a part of your grandchild’s treatment.
• Remain involved as your grandchild matures. Discover that he/she has a unique personality beyond the diagnosis.
• Celebrate your grandchild’s accomplishments and appreciate the changes, big or small.
From a listmate
Dr. Lunsky is studying how people with intellectual disabilities are treated by the health care system. If you would like to participate in the research, please see the information below and the attachment.
Laura Egerton
www.kerrysplaceautismservices.org
Through the Eyes of ASD 2008 Calendars are now available. The Calendar features photographs taken by people who are on the Autism Spectrum. If you would like to purchase a calendar for $7, please let me know.
-----Original Message-----
From: Jonathan Weiss [mailto:Jonathan_Weiss@camh.net]
Sent: Wednesday, December 12, 2007 3:15 PM
To: legerton@kerrysplace.org
Subject: The Family Study
Dear Kerry's Place staff,
As you may know, Kerry's Place is a partner agency working with Dr. Yona Lunsky’s project on psychiatric crises in people with intellectual disabilities. As a result of some feedback from agencies, I’m happy to announce that we’ve started a side project that I think will be useful to you and the clients you support. Many agencies suggested that they had families who would like to share their stories - and here is the chance.
It’s called the Family Study:
You may know of clients who either live with their families or have families who are still involved in their care. You may also know of families who have opinions about the service system, and whose children (of all ages) have experienced behaviour problems or crises at some point (either in the present or in the past). If you speak to families (parents, siblings) who want to talk about their experiences with services and the system, please give them my flyer and ask them to call me! I have an interview that is designed for families, takes as little as 20 minutes, can be done in person or over the phone. I would be happy to talk with families who want to express how they feel about the system, so that we can make things better for them in the future. All you would have to do is give them the flyer or ask them to call me.
I would be happy to come by and chat with you more about this in person, and drop off some flyers for you, other staff, or your staff. This is a really important project, so if you speak to families, please let them know about it. Please let me know what you think.
All the very best,
Jonathan
Jonathan Weiss, Ph.D., C. Psych (Supervised Practice)
Postdoctoral Fellow, Dual Diagnosis Program
Centre for Addiction and Mental Health
Tel: 426-535-8501 x2809
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CTC Newsletter from Sudbury Ontario Attached.
From a listmate
Ask Lindsay Moir:
Looking ahead to special education in 2008
Friday, December 28, 2007
Question:
As the New Year approaches what are the things you wish for, anticipate and foresee in Special Education in Ontario in 2008?
Answer:
• I wish that Kathleen Wynne remains Education Minister for the entire year. This is a bi-partisan, non-political wish, based on the fact that I believe she is the "Special Education Minister." She has a natural and long-term, pre-MPP understanding and commitment to special education. Her predecessor was committed to "Peace in our Time" and delivered an agenda that was designed to keep labour peace in the education sector. Gerrard Kennedy accomplished that, with little or no concern for improved special education. As these hard-won contracts are about to expire, I hope that Ms. Wynne will honour the commitments and improvements that she has delivered to special education families and students. I hope that she will continue the changes outlined in "Special Education Transformation" to strengthen the role of parents and community professionals in Special Education decision-making. Full partnership between educators and families may not be popular at the bargaining table, but is overdue, and essential, in the Special Education system. It is nice to deal with a Minister who has an understanding of Special Education issues well beyond the "Briefing Notes."
• I hope that the Bill 212 changes "to amend the Education Act in respect of behaviour, discipline and Safety" which go into effect on February 1, 2008 are implemented in the spirit and intent of the OHRC Memorandum of Settlement of April 13/07. It is clear that the Memo of Settlement with the OHRC was intended to end the disproportionate use of suspension and expulsion of exceptional pupils for disability-related behaviours. I am hearing that the majority of educators are accepting of the idea that rather than constantly suspending exceptional pupils, that they should now be focussing on appropriate behaviour management to help the student to learn to develop appropriate behaviour over time, while providing a safe learning environment for all students. However, I am also hearing reports that a few major boards are advising principals that they only have "to take into account the student's disability before proceeding to suspension" — a kind of "Yes I have considered it, and I am suspending you anyways" approach — that makes a travesty of the Memo of Settlement's intent. I hope that Minister Wynne will give VERY clear direction to boards on the implementation of Bill 212. I am also concerned that there is a potential to appoint Appeal Boards which will be perceived as biased towards the educators involved and since their decision is final, unfair to the student. I am reviewing two recent Policy Program Memos regard this topic and will give a longer comment in the New Year.
• I wish that the training opportunities in Special Education now mandated, will help the average classroom teacher to feel less-overwhelmed by the integration and inclusion of challenging students into the regular stream. Mandatory Professiona Development is a great start for the many teachers who have not been trained to cope with the exceptional child. It is not realistic to expect EVERY teacher to be be an expert on EVERY exceptionality! Yet some parents do . . . When student teachers graduate in April 2008 they will be required to have some Special Education courses in order to get a Teaching Certificate. The PD days on Spec Ed will gradually "catch up" the large number of teachers who have little Spec Ed training, but teach the majority of exceptional pupils who now are in the regular class at least part of the day. With knowledge comes understanding, with understanding comes confidence!
• We have begun a process which, I believe, will move our secondary schools system away from blind allegiance to "credits", towards a high school system based on continuous learning — taking students from where they are and teaching the knowledge and skills they need . . . We need to support these initiatives because they are good for ALL students, but they are particularly important to those students who do not plan to attend post-secondary institutions (including many exceptional students). High Schools are very traditional environments and may find change very difficult! Support those who are leading this change in 2008.
• The Ministries of Education, Child & Youth Services, and Health have begun to model interdisciplinary collaboration through joint memos, announcements and initiatives. I hope that 2008 is the year when local communities "catch on" to this new way of doing business. We all serve the same student, and "empire-building", multiple points of access and duplication of services, create a maze which only angers and frustrates already-overburdened families. Perhaps we need to look at successful examples of community coordination and find ways to replicate them locally. There simply aren't the resources to continue to "do business" in the old way . . . better informed parents are demanding that service providers "get their acts together and focus services on the child."
To you and yours, I hope that 2008 is the best year yet! I remain optimistic that the education system can, and will be, more responsive to the needs of exceptional pupils. The majority of educators really want to help you and your child.
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
From a listmate
Ask Lindsay Moir:
Are we Winning or Losing? "Exceptional students need positive advocates"
Friday, January 04, 2008
Question:
Are we Winning or Losing?
I am a parent of a child with medical issues AND a Family Support Worker with a provincial Association. Some days I feel that all the work I am putting in, advocating in the school system for both my own child, and my clients is really beginning to make a difference.
Then there are the "other days" . . . Because I am dealing with 10-12 schools in two boards in my working life, I have seen the INCREDIBLE differences from school to school. I have come to conclude that it is all about ATTITUDE and EFFORT.
In one of my schools we have developed a great working relationship over the past three years. We had a real "team approach" and Special Education was a creative problem-solving exercise that involved board, school, parental and community resources. I finally began to see what all the "Transformation" stuff was about.
THEN . . .
The principal changed in September. Even though the rest of the staff is the same, suddenly the "working climate" changed. Everything is back to "power and control" and only the educators make all the decisions.
When I see how fragile progress can be, I feel like giving up!
Any advice for 2008?
Answer:
You have seen what can be done . . . therefore be motivated to replicate your previous success. (Easier said, than done? but do-able!).
I often deal with people who don't even believe that collaboration and "team approach" can actually happen! They are sceptical with a system, that often "says all the right things", but then their action "tells a different story"! Take heart in the fact that you know that it can be done. You have a model to aspire to . . .
I agree with you that education leadership is a key component of the collaborative model. Principals and Superintendents have to be willing to give up some of their perceived power and welcome others into educational decision-making process. You know of at least one principal (and perhaps a Superintendent?) who was willing to do this over "the past three years". How can you use these people to get the working climate in your school back to the way it was? Is it an issue of training?
You suggest that the teachers have been "on board" under the previous principal, are they still committed to collaboration, but don't want to cross the new administrator? Speak confidentially to your most trusted contact in the school and get a feel for staff commitment. Keep this conversation TOTALLY confidential. If the teachers are "on board", then begin to get examples of the "good practices" that have been dropped, opportunities for collaboration that have been missed, reinforce any continuing collaborative practice. If the new person on staff (the principal) can see a commitment to "collaborative culture" they may jump on the band-wagon. Perhaps the principal's previous staff liked the "old way" of power & control, the principal may be surprised to learn that "collaboration" would be positively received in this environment. Most people who have risen to principal, should be astute enough to "go with the flow".
Beyond the special education parents in the school, is collaboration part of the "school culture"? How does the School Council perform? Are parents included or shut out of decision-making in general? The best way to create a school culture of collaboration is to make it a school-wide "way of doing business". In many successful schools I have visited, shared decision-making touches every aspect of school life. The staff have input into decisions. The students and parents are consulted. While in the end the final say often lies with the principal, everyone feels that they have had input and that their ideas have been considered and respected. In these schools, Special Education collaboration is just an extension of a school-wide "way of doing business". How can you encourage and support collaboration as a school-wide way of doing business? There are excellent resources and training programs to develop this culture.
I do believe that we are "winning" . . .
• I see more and more senior administrators being appointed who have personal experience in special education. These people have been successful and are known to,and well-respected by parents and community agencies involved in Special Education. A recent example is Bill Tucker, new Director in the Thames Valley DSB.
• The Ministry of Education is modelling collaboration from the top-down. Although some would have the Minister be "more directive" in changing the system, she has been more direct, and more committed to Spec Ed changes than any of her recent predecessors.
• Teachers are becoming better-trained and more knowledgeable in dealing with exceptional children. Compulsory pre-service and in-service training will only help in this regard. The number of teachers and educational support workers taking training in specific exceptionalities such as autism is growing rapidly, after years of stagnation in this kind of training. Boards have steadily increased the number of staff they are sending to these seminars over the past two years. Knowledge breeds Understanding!! Trained staff are not threatened by knowledgeable parents and support workers.
For every regression like you describe, there are many programs that are becoming more collaborative. Change takes time and persistence — Don't back off — exceptional students need positive advocates!
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at ask.questions@yahoo.ca He will answer as many questions as possible.
From a Listmate
Here is the contact information for a few of the Provincial Ministers whom you may wish to discuss the autism issues with:
Ministry of Education
Kathleen Wynne, Minister of Education
Mowat Block
22nd Flr
900 Bay Street
Toronto, Ontario
M7A 1L2
tel: 416-325-2600
fax: 416-325-2608
Ministry of Children and Youth Services (MCYS)
Deb Matthews, Minister of Children and Youth Services
14th Flr
56 Wellesley Street West
Toronto, Ontario M5S 2S3
tel: 416-212-7432
fax: 416-212-7431
Ministry of Community and Social Services (MCSS)
Madeleine Meilleur, Minister of Community and Social Services (MCSS)
Hepburn Block
6th Flr
80 Grosvenor Street
Toronto, Ontario
M7A 1E9
tel: 416-325-5225
fax: 416-325-3347
Ministry of Health and Long-Term Care
George Smitherman, Minister of Health and Long-Term Care
Hepburn Block
10th Flr
80 Grosvenor Street
Toronto, Ontario
M7A 2C4
tel: 416-327-4300
fax: 416-326-1571
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Also, keep in mind that you can contact your local MPP by letter, email, fax, or telephone. You can find their contact information at http://www.ontariotenants.ca/government/mpp.phtml .
----------------------------------------------------------------------------------------------------------
Here is the contact information for the opposition critics who will continue to support the autism community in our never-ending effort to ensure that appropriate programs and services are in place for our children:
PC Party
Frank Klees, MPP
Queen's Park Office
Room 447, Legislative Bldg
Queen's Park
Toronto, Ontario
M7A 1A8
tel: 416-325-7316
fax: 416-325-1573
email: fklees@frank-klees.on.ca
NDP
Andrea Horwath, MPP
Queen's Park Office
Room 112, Legislative Bldg
Queen's Park
Toronto, Ontario
M7A 1A5
tel: (416) 325-2777
fax: (416) 325-2770
email: ahorwath-qp@ndp.on.ca
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Also, here is the contact information for writing Letters to the Editors of the Star, Globe, and Sun. They like to receive feedback for articles they print and sometimes print the letters they receive. By writing to them in response to articles they print about autism, you can help to keep the autism issue alive in the media and the public.
Star: lettertoed@thestar.ca
Globe: letters@globeandmail.com
Sun: editor@tor.sunpub.com
From a listmate
Globe
Q&A: Steve Scherer
Globe and Mail Update
January 4, 2008 at 2:46 PM EST
Area of research: Human genome and disease
Hospital/University: Hospital for Sick Children
Came to Toronto from: Windsor, Ontario
‘So, what do you do?': If I'm feeling chatty with lots of time to answer questions I tell them I'm a DNA doctor studying working on the human genome and studying the genes involved in autism. If I don't want to talk... Professor at the University.
Most influential role model: PhD supervisor, Dr. Lap-Chee Tsui, who discovered the cystic fibrosis gene and is current President of the University of Hong Kong.
What you always forget about your specialty area: Meiosis: how chromosomes pair and exchange DNA.
Most satisfying point of your career: Discovering copy number variation (CNVs) as the most common form of genetic alterations in human DNA.
What you expect in 2008: Sequence the genome of the most famous person in history, find more autism susceptibility genes, and then pick up the pace in the second and third quarter of the year.
Best kept secret in the research district: What MaRS actually stands for? How to win a Nobel Prize in Medicine (tongue in cheek since nobody in Toronto has one).
Your favourite thing/place/activity in Toronto: Saturday morning jog through High Park and Bloor West Village.
What you do to forget about work: Garden, sleep (although sleep is over-rated).
Best part of your job: Is that is not a job, it's a passion! I love the competition and energy.
Toughest part of your job: Keeping on top of the 200 emails I receive each day.
Most demanding aspect of medical research: Building a sustainable enterprise and the extensive travel.
Favourite quote: “Life is what happens to you when your busy making other plans” – John Lennon.
Exercise regime: Pick-up hockey, and running between meetings at SickKids, MaRS and the University.
Who/what shares your home: Spouse Jo-Anne and children Josef and Julianna.
Average length of New Year's resolution: Set time-limited (24 hour) resolutions it's the best way to keep them.
-------------------------------------------------------------------------------------------------------------
Globe
Racing to solve the puzzle of autism
TENILLE BONOGUORE
Globe and Mail Update
January 4, 2008 at 2:17 PM EST
As Steve Scherer celebrates his 44th birthday today , he won't have to look far to count his blessings. There are his wife and two young children, the million-dollar research grant he will receive this month from the Wellcome Trust, and the satisfaction of seeing Science Magazine name the genetic studies he worked on Story of the Year for 2007.
But one thing remains out of reach, although he is getting closer to an answer each year: understanding the genetics of autism.
Every human genome is 99.5 per cent identical. The few changes are what make everyone unique. Some mutations make us better; others have no noticeable impact. Sometimes a change hits a critical gene, leading to disorders or disease.
"Everybody carries these changes. It's just a roll of the dice. Some lead to medical outcomes. Some don't," Dr. Scherer says.
The Hospital for Sick Children has been cataloguing genetic variations for a decade, creating a massive information bank called the Database of Genomic Variants, now known worldwide as the Toronto database. When American scientist Craig Venter became the first human to have his entire DNA sequenced this year, he came to Dr. Scherer to analyze it.
By cataloguing the differences between humans, or the "copy number variations," Dr. Scherer hopes to find what mutations predispose people to certain diseases. "It's arguably the hottest topic in science," he says. "We have no idea what we're going to find. Every time we look closer and closer, we find interesting things."
But his main focus is the spectrum of disorders known as autism. In a paper to be published this year, he shows that 7 per cent of autism cases share a certain variation in genetic copy numbers, involving specific regions of the chromosome. That means a couple of genes are definitely involved in autism, he says.
That knowledge can help develop faster genetic testing and better therapeutics, but he stresses that it does not solve the entire puzzle.
"Autism is a complex condition. It's a group of many different conditions. Some are single gene changes, some probably very complex," he says.
By using what's known as "discovery science" — a brute-force approach that basically throws a lot of ideas on the wall to see what sticks, as opposed to exhausting one idea before moving onto the next — he says entirely new avenues are opening up very quickly.
From a listmate
PUBLICATION:
The Guardian (Charlottetown)
DATE:
2007.12.26
SECTION:
Front
PAGE:
A1
SOURCE:
The Guardian
BYLINE:
Jim Day
ILLUSTRATION:
Currie
WORD COUNT:
324
Coverage of children great relief for parents; Province reaches
settlement
on coverage for autistic youngsters
Island families are praising the province for addressing their
concerns
over disability coverage in a fast and fair manner.
Brad and Dale Wonnacott of Charlottetown were among three families who
have
children with autism that reached a settlement this week with the
government.
- one would discuss details of their settlement, but the families
suggested
the deals were generous.
"To this government's credit, we've resolved the issue,'' said Brad.
"And
Dale and I are very happy with the outcome.''
The Wonnacotts, among others, brought a human rights case about six
years
ago against the previous Binns government when it brought in the
Disability
Support Program (DSP).
The DSP is a financial assistance program, administered by the
province
for
Islanders with a qualifying disability. It replaced the Family Support
and
Employability Assistance for People with Disabilities programs.
There has been a lot of criticism of the DSP by advocacy groups who
feel
the qualification criteria is not as accommodating as it should be.
The Wonnacotts, who have an 11-year-old son with autism, were among a
group
of families of children with cognitive challenges that successfully
took
the program to task for treating the intellectually disabled
differently
than the physically disabled.
Brad said the settlement reached earlier this week shows the new
Liberal
government recognized inequality existed in the DSP.
"I believe there was a spirit of co-operation that was found,'' he
said.
Colleen Douse of Avondale is pleased that her family's six-year fight
with
government has finally been resolved.
"We're very satisfied with it," she said of the settlement that will
award
them more money to care for their 14-year-old daughter, Jewel, who has
autism.
She and her husband, Victor, will now be waiting for the outcome of a
current review of disability services in the province.
The committee is mandated to review and get public input on what gaps
exist
in current legislation and services. The committee must then submit a
report of its findings to Health Minister Doug Currie. Brad praised
both
Currie and Premier Robert Ghiz for their handling of the contentious
issue
since the new Liberal government came to power.
"I feel confident from what has been said and the actions of the
government, that things will get much better for Dale and I and our
son
and
I hope for all families of children with autism," he said.
Almost 22,000 Islanders are reported to have disabilities.
From a listmate
Most of these articles don't include information on ABA but I thought that many of you would be interested in what they share and they do provide a good opportunity to write to the editors.
Taline
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Star
Autism, vaccine ingredient not linked: Study
Jan 07, 2008
ALICIA CHANG
THE ASSOCIATEDPRESS
LOS ANGELES – Autism cases in California continued to climb even after a mercury-based vaccine preservative that some people blame for the neurological disorder was removed from routine childhood shots, a new study found.
Researchers from the state Department of Public Health found the autism rate in children rose continuously during the 12-year study period from 1995 to 2007. The preservative thimerosal hasn't been used in childhood vaccines since 2001, but is used in some flu shots.
Doctors say the latest study adds to existing evidence refuting a link between thimerosal exposure and autism risk and should reassure parents that the disorder is not caused by vaccinations. If there was a risk, they said, autism rates should have dropped between 2004 and 2007.
The findings show "no evidence of mercury poisoning in autism'' since there was no decline in autism rates even after the elimination of thimerosal, said Dr. Eric Fombonne, an autism researcher at Montreal Children's Hospital who had no role in the research.
Some advocacy groups blame thimerosal for the impaired social interaction typical of autism. Nearly 5,000 claims alleging a vaccine-autism link have been lodged with the federal government, which is deciding whether victims should receive compensation from a government fund.
Dr. Daniel Geschwind, a neurologist at the David Geffen School of Medicine at the University of California, Los Angeles, said the focus now should be on exploring the causes of autism such as possible genetic links.
"Something else must be at play and we need to know what that is if we're really serious about preventing autism," said Geschwind, who had no connection with the study.
For their study, California public health officials calculated the autism rate by analyzing a database of state-funded centers that care for people with autism and other developmental disorders.
They found the prevalence of autism in children aged 3 to 12 increased throughout the study period. For example, 0.3 per 1,000 children born in 1993 had autism at age 3 compared with 1.3 per 1,000 children born in 2003. Similar trends were found in other age groups.
"These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California,'' the researchers wrote.
Results were published in January's issue of the journal Archives of General Psychiatry. The study did not explore why there was an increase in autism cases.
Federal statistics show about one in 150 children in the United States have autism, higher than previous estimates. Researchers say it's unclear if the increase is due to changes in how the disorder is classified or whether it's an actual spike.
Autism is characterized by impaired social interaction and communication skills. There is no cure, but early therapy can lessen the severity.
Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, called the California research "a very important study," and said all possible causes – genetic and environmental – need to be explored aggressively.
"The bulk of the evidence thus far suggests that mercury is not involved, but I think parents still have many questions," said Dawson. "I think until parents are satisfied, we need to continue to examine the question.''
--------------------------------------------------------------------------------------------------------
Globe
WORLD-CLASS LABS
Science city
Tenille Bonoguore reports on our booming medical research scene and meets 12 of its best specimens. Photographer Tory Zimmerman heads out to capture them in their natural habitats
TENILLE BONOGUORE
January 5, 2008
The flat fluorescent glare shines late into the night at the nexus of University and College streets. Illuminated offices dot the evening sky, static above the hum and wail of the city's heart.
In nearby emergency rooms, lives are won and lost. But under those quiet lights, away from emergency's frantic pace and panic, scores of researchers perch over microscopes and sift through reams of data, devoting days and nights to the unknowns of human function.
This is Toronto's research district, a maze of concrete and glass where the finest minds collaborate, turning the city into a global centre of biomedical discovery.
Nine research institutes employing 5,000 university faculty members, 2,000 graduate students and 1,100 postdoctoral and clinical fellows lie within a 20-minute walk of each other. This biomedical cluster at the heart of Toronto is one of the largest on the continent, and is one of the 10 largest in the world.
In the past two years, the city has scored some major coups, luring world-leading cancer scientist Tom Hudson from Montreal; cell biologist Ben Neel from Boston; and stem-cell biologist Gordon Keller, who came to Toronto in 2006, just months after New York magazine named him one of the scientists that city could not afford to lose.
Toronto is also home to Tak Mak, who discovered the "key to the immune system" T-cell receptor, and John Dick, who discovered the first cancer stem cell in 1994 and last year grew a human cancer in a lab mouse for the first time.
But one just has to look at 12 of Toronto's leading researchers (seen at right and profiled inside) to see a cross-section of our medical community's great achievements - from reversing the damage caused by heart attacks and spinal injury to better understanding our immune system through the study of sea urchins.
Each of these researchers is set to break new ground in 2008, and their stories represent just a fraction of the exceptional work being pursued in Toronto.
"There's an enthusiasm in the research community that's very exciting to be part of," says Dr. Keller, who now heads the McEwan Centre for Regenerative Medicine.
Dr. Hudson, who left Quebec to head the Ontario Institute for Cancer Research, says the city's "tremendous power" is built on a strong history: Stem-cell research began here.
"It's innovative," he says of Toronto. "I've never felt closer in my research career to thinking we will have an impact. I feel my goals are going to happen here."
But the sector's size is also its greatest challenge. While government funding changes in the mid-1990s helped to create the current fertile environment, Peter Lewis, vice-dean of research for the University of Toronto's faculty of medicine, says co-ordinating and running the research is expensive. "What we really need is the full cost of research [to be] funded," he says.
For every dollar given to research, U of T must source 83 cents for related, indirect costs. U.S. colleges generally only have to source 50 cents per grant dollar, he says. "That's what's really limiting us," he says. "We [in Canada] do need a little bit more."
That bid could be difficult. A survey of the nation's federal politicians last year showed that most policy-makers do not realize that grants don't cover indirect costs of research, and were largely unaware that hospitals have become the driving force of health research.
Still, John Evans, board chairman of the non-profit MaRS Centre, which helps to turn research into viable businesses, envisages a day when research is seen as a social and economic driver, and the city shines as brightly as better-known centres such as Boston and Palo Alto.
And the physical concentration of Toronto's research in a strong, shining core gives it an advantage no other city shares, he says.
"When you develop a concentration of people with a shared objective and bring different skills, that's when most rapid advances will occur," he says. "Toronto has a chance to do that, to develop areas of tremendous strength. It's a very exciting time. There's tremendous vitality."
MEDICAL MINDS
PRABHAT JHA: THE NUMBERS GUY
Saving lives by charting millions of them
Dr. Jha is the director of the Centre for Global Health Research at St. Michael's Hospital
Prabhat Jha likes to joke that he's professionally obsessed with sex and death. As lead researcher on the Million Death Study - the largest health study in the world - he's only partly kidding.
The Indian-born researcher, who was raised in Winnipeg, did his PhD at Oxford and was then lured to Toronto from the World Health Organization in Geneva, has already had a massive impact on worldwide health. His essays showing the impact of tobacco control around the world spurred the Bill & Melinda Gates Foundation and the Bloomberg Family Foundation to pour hundreds of millions of dollars into global tobacco control and formed the basis of the WHO treaty against tobacco in 2005.
Since 1997, he has been recording and analyzing deaths in southern India. So far, 350,000 have been recorded, with 650,000 more to be done by 2014. Field researchers speak to families about both how the deceased lived and how they died, in a bid to find out more about "the world's big killers."
"I have a nerdy love of numbers that most people can't understand," he admits jovially in his downtown Toronto office. But at the start of the 21st century, with health surging into the public spotlight, he says these numbers are proving essential. "There's some serious money that's being put on the table," he says. "We could have a rapid transformation of the lives of a billion poor."
The Million Death Study covers 14 million people in two million households over about 14 years, and is creating a wealth of information. Dr. Jha's plans to store a drop of blood from each interview subject could one day turn the database into the world's largest bio-bank as well.
Not even halfway through the project, the impacts are already being felt. The earliest data showed there are up to 10 million girls missing from the Indian population. Two decades of selective abortion was shown to be the likely cause, a finding that spurred debate and government action in 2006 to improve support for girl children and help change the public perception that girls were less worthy.
This year, their calculation of HIV numbers in India turned up a startling result, one the researchers did not believe at first: The spread of HIV has declined in that country, a drop chiefly attributed to improved education for sex workers in the south. That finding was a major factor in the United Nations' decision to reassess its global HIV numbers. In November, the global estimate of people living with HIV was reduced to 32.7 million from 39.5 million, and the education program in India's south is now being extended across the country.
While his data-analysis work is viewed as a curiosity to some, it has real-world impact. Dr. Jha's tobacco studies have helped persuade Caribbean nations to take tobacco control seriously.
"You can come up with all these gee-whiz-fantastic essays and new molecular discoveries and the like, but they ultimately have to be tested in the human population for their relevance," Dr. Jha says.
"I think both are really beautiful sciences. Toronto's really good at that basic, elegant science work, but just understanding how disease unfolds in a population is also beautiful."
Q&A
Most influential role model:
Sir Richard Peto, University of Oxford, and Sir Mick Jagger.
Most satisfying point of your career so far:
Designing, in 1999, the national AIDS program in India, which has turned around the HIV epidemic in South India. And writing the reports that became the basis for a worldwide treaty on tobacco control.
Best-kept secret in the research district:
B Espresso Bar on Queen Street East.
Your favourite thing/place/activity in Toronto:
Sherwood Park with my daughters on a sunny day.
What you do to forget about work:
Ask my wife why the heck she married me.
Toughest part of your job:
Dealing with management consultants who think they know public health.
Average duration of New Year's resolution:
I keep the resolution, but just switch to Chinese, Indian or Ethiopian New Year dates as needed.
STEVE SCHERER: GENOME TRACKER
Racing to solve the puzzle of autism
Dr. Scherer is a senior scientist in the field of genetics at the Hospital for Sick Children. He is also a professor of medicine at the University of Toronto.
At right: Dr. Scherer jogs in High Park.As Steve Scherer celebrates his 44th birthday today, he won't have to look far to count his blessings. There are his wife and two young children, the million-dollar research grant he will receive this month from the Wellcome Trust, and the satisfaction of seeing Science Magazine name the genetic studies he worked on Story of the Year for 2007.
But one thing remains out of reach, although he is getting closer to an answer each year: understanding the genetics of autism.
Every human genome is 99.5 per cent identical. The few changes are what make everyone unique. Some mutations make us better; others have no noticeable impact. Sometimes a change hits a critical gene, leading to disorders or disease.
"Everybody carries these changes. It's just a roll of the dice. Some lead to medical outcomes. Some don't," Dr. Scherer says.
The Hospital for Sick Children has been cataloguing genetic variations for a decade, creating a massive information bank called the Database of Genomic Variants, now known worldwide as the Toronto database. When American scientist Craig Venter became the first human to have his entire DNA sequenced this year, he came to Dr. Scherer to analyze it.
By cataloguing the differences between humans, or the "copy number variations," Dr. Scherer hopes to find what mutations predispose people to certain diseases. "It's arguably the hottest topic in science," he says. "We have no idea what we're going to find. Every time we look closer and closer, we find interesting things."
But his main focus is the spectrum of disorders known as autism. In a paper to be published this year, he shows that 7 per cent of autism cases share a certain variation in genetic copy numbers, involving specific regions of the chromosome. That means a couple of genes are definitely involved in autism, he says.
That knowledge can help develop faster genetic testing and better therapeutics, but he stresses that it does not solve the entire puzzle.
"Autism is a complex condition. It's a group of many different conditions. Some are single gene changes, some probably very complex," he says.
By using what's known as "discovery science" - a brute-force approach that basically throws a lot of ideas on the wall to see what sticks, as opposed to exhausting one idea before moving onto the next - he says entirely new avenues are opening up very quickly. "Things go so fast now," he says. "No one has a five-year plan any more. Things change almost on a monthly basis."
Q&A
Most influential role model:
My PhD supervisor, Dr. Lap-Chee Tsui, who discovered the cystic fibrosis gene and is now president of the University of Hong Kong.
What you always forget about your specialty area:
Meiosis (how chromosomes pair and exchange DNA).
What you expect to achieve or discover in 2008:
Sequence the genome of the most famous person in history, find more autism susceptibility genes and then pick up the pace in the second and third quarter of the year.
Best-kept secret in the research district:
How to win a Nobel Prize in Medicine (tongue in cheek since nobody in Toronto has one).
Toughest part of your job:
Keeping on top of the 200 e-mails I receive each day.
Favourite quote:
"Life is what happens to you when you're busy making other plans." - John Lennon.
DARCY FEHLINGS: REHAB GAMER
Turning fun into cutting-edge therapy
Dr. Fehlings is a developmental pediatrician at Bloorview Kids Rehab, and also does research in the area of cerebral palsy. At right: Dr. Fehlings skating at Rennie Park with her son, Nick.
Botox and video games aren't often lauded as gifts to humanity, but for developmental pediatrician Darcy Fehlings, they are secret weapons to help children with cerebral palsy.
Through her work at Bloorview Kids Rehab and the University of Toronto, Dr. Fehlings is pioneering the use of botulinum toxin to relax the stiff muscles of children with the disease, which affects two to three people in every 1,000.
The botulinum toxin - which is also the basis for Botox - is injected into muscles to ease the spasms and stiffness that can cause stunted growth and twisted limbs. While the muscle is temporarily relaxed, rehab workers can move the affected muscles and limbs to relieve pain and promote normal growth. In some cases, Dr. Fehlings hopes the treatment may even help children avoid altogether the orthopedic surgery that is often used to cut muscles and release tightness.
Meanwhile, her team has linked up with rehabilitation engineer Tom Chau to create virtual-reality games for children who have a weakened side, one of the most common symptoms of cerebral palsy. Using virtual-reality games, children unwittingly use the weak arm or hand that usually may be ignored.
"It is a mainstream activity so that kids with disabilities aren't singled out when they are doing their therapy," Dr. Fehlings said. "It is also something that they can do with friends and siblings in the home rather than coming to the rehab institute."
And for children with the condition, being given a prescription for half an hour of play time isn't too hard to swallow.
This year will be important for Dr. Fehlings's research: Her team will evaluate the games' effectiveness, while a long-term study of the botulinum treatment - which was used for 416 children in 2006 - will begin this year.
On top of that, Dr. Fehlings, who is married to neurosurgeon and researcher Michael Fehlings (see page M4), was named the first chair in development pediatrics for the Bloorview Children's Hospital Foundation in November. She will also head Bloorview's Centre for International Leadership in Child Development, which she hopes will be launched this year.
"It's always difficult to gauge the impact of your work," Dr. Fehlings said. "A banner year would be a positive outcome, but we have to wait to see what the research shows."
Q&A
What you forget about your specialty area:
How much time it takes to do things well!
What you do to forget about work:
I'm learning how to play the guitar.
Best part of your job:
Because of my dual role as a doctor and scientist, I can bring together clinicians, scientists, graduate students and families to create cutting-edge treatments for children with disabilities.
Most demanding aspect of working in medical research:
Figuring out the important research questions to ask in order to improve the lives of children with disabilities and their families.
Favourite quote:
"Seize the day, put not trust in the morrow!" (Carpe diem, quam minimum credula postero) - Horace.
Average length of New Year's resolution:
I avoid New Year's lists. I prefer a daily "to do" list.
KELLY MACDONALD: VIRUS FIGHTER
Getting Creative With The Hiv Vaccine
Dr. MacDonald is a physician and a microbiologist at Mount Sinai Hospital. She is also the director of the HIV research program and holder of the Ontario HIV Treatment Network endowed chair of HIV research at U of T
At right: Dr. MacDonald drawing in her home studio.
When the news emerged in the mid-1990s that a group of sex workers in Nairobi were naturally resistant to HIV, Kelly MacDonald was already thinking beyond the headlines. The new clue to resistance was stunning, but as part of the University of Manitoba's research team in Kenya, she realized they were still a long way from beating such a rapidly mutating virus.
Recruited to the University of Toronto in 1994 and now heading its HIV research program, Dr. MacDonald hopes that she is about to unlock another piece of the puzzle that is HIV/AIDS.
In the rapid-fire delivery of a woman with too many ideas and too little time, Dr. MacDonald says her light-bulb moment came during a lecture she was giving about chicken pox. HIV vaccines are expensive and must be regularly boosted, so she had been searching for a way to get those vaccines into the body in a simple, targeted, long-lived way. Suddenly, she realized: Why not attach the HIV medicine to a chicken-pox vaccine?
The chicken-pox vaccine used in Canada is a live virus that has been crippled to make it virtually harmless. Injecting it into the body gets the natural immune system to fend off the illness with minor risk and means the body can recognize the full virus if it's contracted. "Why couldn't we use this vaccine as a vector, or carrier?" she wondered. A child could receive an HIV/chicken-pox vaccination, with a booster late in life. Dr. MacDonald believes this approach could work well in Africa, where chicken pox is uncommon and adults wouldn't yet have been made resistant.
So far, her research team has built an HIV vaccine into the human chicken-pox vaccine, but to test it, they have to use animal models.
It's not known if Rhesus macaques used in testing can handle the human chicken-pox virus (without the HIV vaccine). The team should find that out this month. If it works, the study could move on to the HIV/chicken-pox combination almost immediately. If not, the researchers will have to build the HIV vaccine onto a monkey virus, setting the project back about nine months.
Through clinical work in Kenya and research work based in Toronto, Dr. MacDonald says she can retain her confidence while facing the challenge of HIV/AIDS.
"Before I came here, we didn't really have any HIV lab research. Now we have probably one of the best known immuno-biology labs of HIV," she says.
That collaboration between Toronto, Manitoba and Nairobi is seen as one of the most important projects in HIV worldwide, she notes, and her team has collaborations all around the world.
According to Dr. MacDonald, if they choose the wrong carrier virus, the entire project could fail. "Vaccine research almost always fails. I almost don't dare to dream too big," she says. She also admits a vaccine alone will not beat HIV: Public education and behavioural change is needed too. "There's not going to be a magic bullet."
Nonetheless, the gains brought about by a vaccination would be significant. "Every day that we have a delay, we're paying a huge price as a society," Dr. MacDonald says. "This is a very novel strategy, a prototype that could offer us a big jump ahead."
Q&A
Your one-line response to "So, what do you do?"
Mostly I change the topic because it always generates more questions if I admit the truth. If I confess, I usually limit it to "I am a scientist." That way I get to hear about them instead of listening to the same old stuff from me.
What you always forget about your specialty area:
My pager number! It keeps getting changed, or maybe it's a subliminal wish to receive fewer midnight calls.
Best part of your job:
Struggling along with my graduate students to get them through their PhDs, then watching them defend their theses and go on to surpass all of my achievements.
Most demanding aspect of medical research:
The requirement to be "on your game" constantly, over a whole career. In science, you are really only worth what you have produced in the last three years.
RANDY MCINTOSH: BRAIN CARTOLOGIST
Cooking up a map of the mind
Dr. McIntosh is a neuroscientist at the Rotman Research Institute's Baycrest Centre.
At right: Dr. McIntosh prepares a gourmet meal for himself and his wife, a Friday-night tradition
The knife slices into juicy flesh, liquid spilling over Randy McIntosh's hand. He flings another ingredient into the pan. When this researcher isn't using his brain to find ways to see into yours, he's in the kitchen, cooking up another original feast.
"The nice thing about cooking is you start with a way from going from this mess of ingredients to a meal, but along the way you might change things," he explains. "Despite what people think, that's how the brain works."
According to Dr. McIntosh, if one brain area is disrupted, others cover the gap, with varying degrees of success. Slurred speech after a stroke may not be due to the injury: It could be the brain's flawed effort to recover from injury. The brain reorganizes itself, but never in exactly the same way. "That's how cooking is. You don't put exactly the same amount of salt in each time, but the final meal is much the same," Dr. McIntosh says.
The brain is not like a computer, he adds, describing it rather as an orchestra in which each section acts in relation to every other section.
For his work at the Rotman Research Institute, which is part of the Baycrest Centre, volunteers are hooked up to machines that record brain activity. They then do a variety of tasks to gauge reaction time, memory, attention and other functions, and the results are turned into a map of the brain's function (its "dynamic range"). Some brains exhibit more localized activity, while others have a larger dynamic range. Under current theory, the more widespread the brain's function, the better a person's ability to recover from injury.
"It has pretty profound implications about how mental function comes about, but also how to deal with disease," Dr. McIntosh says.
Toronto is one of three or four centres in the world pursuing this idea, and Baycrest hopes to open a Centre for Brain Fitness by the end of this year. In the meantime, Dr. McIntosh is wading through dynamic-range maps in a bid to create standard maps that could be used to predict treatment outcomes.
Dr. McIntosh hopes to create a five-minute diagnostic test one day that would gauge the health of a person's brain and pick up any changes or early problems, with referral for a full test if necessary. Plus, dynamic-range mapping during rehabilitation could show in real time whether it's working, he notes.
"I think we're at the point now in understanding how the brain works that we need a new perspective on the whole enterprise," he says.
Q&A
What you always forget about your specialty area:
High-pass vs. low-pass filters. We use them for data processing and the terms are backwards from what you would think intuitively. Wikipedia is great for straightening this out.
Your exercise regime:
Running and yoga, primarily to compensate for my love of food.
Who/what shares your home:
My wife, who is also a scientist, and a neighbourhood cat, who has taken a liking to us and probably three or four other homes.
Average length of New Year's resolution:
There were two that I can remember. The first was in grad school when I resolved to quit smoking. I haven't smoked since. The second was to cut out junk food. I had Cheezies and a beer when I got home last night. So I guess the average is somewhere between forever and never.
HELEN MCNEILL: PATHWAY EXPLORER
Uncovering the true nature of cancer
Dr. McNeill is the director of the collaborative program in developmental biology at the Samuel Lunenfeld Research Institute at Mount Sinai Hospital
At right: Dr. McNeill in the Cedarvale Ravine, one of her favourite spots in the city.
There are many holy grails in cancer research, and Helen McNeill hopes 2008 will take her a step closer to finally holding one aloft. Her groundbreaking work, which she began at Cancer Research UK in London and brought to Toronto in 2005, looks at how cells organize into tissues. At heart is the question of why one cell stops growing while others surge out of control through the body.
Experimenting mostly on fruit flies - whose two-week lifespan she says both promotes quick results and alleviates some measure of guilt - Dr. McNeill has been unlocking the secrets of a gene named Ft (scientists commonly call it "fat"). Ft is an adhesion molecule that not only binds proteins together, but also tells cells how they should interact with other cells, and how large to grow. When an organism has a problem with Ft, the cells overgrow and can turn into tumours. Without the gene, you couldn't exist, she says. With one hitch, you could be prone to a disease or illness.
In something of a global watershed last year, a number of labs simultaneously realized Ft's role in cell change, finding that Ft regulates both cell size and pre-programmed cell death called apoptosis (which occurs if a cell is damaged). Dr. McNeill's lab is the only one thus far to apply that research to vertebrates. Its studies found that mice without that binding-and-communication molecule develop "a bunch of human diseases" involving kidney function, hearing and other things, Dr. McNeill said.
Ft is also involved in a pathway called Hpo (known as "Hippo"). A pathway is a group of cells that perform a certain function, and Hpo is emerging as a major new player in cell control. It is implicated in a large number of human cancers, including breast cancer, sarcomas and liver cancer. The pathway is the same in fruit flies and humans, and Dr. McNeill is hoping to uncover what specific role Ft plays in Hpo's function.
By fully knowing Ft's part, Dr. McNeill hopes that pharmacists could create something that inhibits the growth of disease. "It helps understand disease more and might help find therapy," she says. "We could have drugs to treat this regulation. That's certainly the hope, but it's a long, tough thing."
Mutations of the Ft gene could also become a biomarker to help identify women at most risk of breast cancer and cancer recurrence. "It's going to be very important for a bunch of human cancers and a bunch of diseases," she says.
Q&A
What you do to forget about work:
Be with my family - ski, hike, read books.
Your favourite activity in Toronto:
Biking with family through ravines.
Best part of your job:
When you get a totally surprising result you hadn't expected, then trying to fit it in with all we know.
Toughest part of your job:
Knowing when to stop an area of investigation.
Favourite quote:
"Science has great beauty. A scientist in his laboratory is not only a technician: He is also a child placed before natural phenomena which impress him like a fairy tale." - Marie Curie.
Your exercise regime:
Sporadic at best. First thing to be dropped when faced with home or work demands.
Who/what shares your home:
Connor (son), Geoff (husband) and Keiko (kitten).
Anne-Claude Gingras is an investigator of systems biology at the Samuel Lunenfeld Research Institute at Mount Sinai Hospital.
ANNE-CLAUDE GINGRAS: PROTEIN DETECTIVE
Studying the secret of disease's off-switch
At right: Dr. Gingras at the Dark Horse Espresso bar, one of her haunts
As a young leader in protein studies working in Seattle in 2005, Anne-Claude Gingras was flooded with job offers from around the world: Switzerland, the United States and her home province of Quebec all wanted the talented researcher. But when Toronto came calling, she couldn't say no. "It's definitely the place to be in Canada, and I'd say top five in the world," she says.
Now, as the youngest principal investigator at Mount Sinai Hospital's Samuel Lunenfeld Research Institute, Dr. Gingras is studying a family of proteins that could play a role in the development of cancer, drug resistance, and even in innate immunity.
The group she is focusing on, a complex called protein phosphatase 4, controls cells by adding or removing phosphates to activate certain actions, in essence turning a cell on or off. By themselves, they don't do much, she says, but together, the proteins affect cell growth, division and other activity. "When this protein [group] gets deregulated," she says, "the cell doesn't stop when it's supposed to, and bad things happen." Bad things like cancer.
But it may not be the proteins themselves determining what changes occur: Dr. Gingras says the binding partners that hold the structure together could be the key.
"My dream would be to be able to really validate the link with DNA imaging," she says, referring to a process she is going to explore using leading-edge mass spectrometry equipment at the Lunenfeld Institute. If that is validated, the research could one day be used for human treatment. "I hope that would be feasible. We want to cure people. We want to help people," she says.
Dr. Gingras has already found a link between this protein complex and human resistance to the cancer drug cisplatin, used to treat many forms of cancer. It's one of the most potent anti-tumour agents known, but many patients become resistant to the therapy. "By working out why and how, we can understand how to get a better therapy for people who've had cancer and are resistant to those drugs," she explains.
This year, Dr. Gingras will be pushing the boundaries of knowledge again, investigating PP4 and another very large protein complex she believes is related to innate immunity. While she is hush-hush about details - an article on the subject is pending publication in a leading journal - she says it appears the new protein complex could be an on-off switch for genes that helps to create an immediate defence system against infection.
While she foresees a "really, really nice year" ahead for her lab, she admits that few people outside the science realm will probably be interested. Even for researchers, the big picture can be intimidating.
"It's amazing," Dr. Gingras says. "The human system is so complex. Every cell type behaves in a slightly different manner. It's a bit daunting if you sit down and think about it."
Q&A
What you forget about your specialty area:
I always forget that cells in culture don't know it is the weekend.
High point of your career:
Probably finally getting a "real" job, so that my uncle stops asking me why it is taking me so long to get done with school.
What you do to forget about work:
I cook - same principle as doing experiments, but sometimes it tastes better.
Most demanding aspect of medical research:
It really is a balancing act where you must design experiments, bring in money, train students and fellows, administer the funds and communicate scientific results. You frequently end up working long hours.
Your exercise regime:
Flexing my thumb muscles by pipetting, running to catch the streetcar and pretending I am doing yoga.
Who shares your home:
Another scientist! Hours of exciting conversations at breakfast.
MICHAEL FEHLINGS: NERVY INVESTIGATOR
Shaping solutions to spinal cord injury
Dr. Fehlings is the Krembil Chair in Neural Repair and Regeneration, the medical director of the Krembil Neuroscience Centre at Toronto Western Hospital, and a professor of neurosurgery at University of Toronto
At right: Dr. Fehlings works on the Christmas tree he cut down from his family farm.
Medical success is relative. One paraplegic person learns to walk again; another learns to hold a glass. For neurosurgeon Michael Fehlings, both events are equally momentous. When the nervous system is involved, every gain can be a life-changer.
As a young surgeon in the early 1990s, Dr. Fehlings saw many people with spinal-cord injuries whose lives weren't being made much better in the hospital. It seemed medicine wasn't doing enough, he says, so he dived into research.
Now, as a dominant force in neural medicine, Dr. Fehlings believes that spinal-cord research and regenerative medicine are about to enter a golden era, one where theory will turn into viable treatments. "The old rules don't apply any more," he says.
In a major trial led by Dr. Fehlings last year, doctors operated on damaged spinal cords within hours of the injury. Some results were striking: One man paralyzed from the neck down after a skiing accident near Barrie, Ont., recovered near-normal function.
While that result was exceptional, Dr. Fehlings said it was a promising example of what early intervention can achieve. This year, national protocols to adopt early surgery will be developed, and Dr. Fehlings hopes that it will be standard practice within five years.
He is also leading other trials that use drugs and stem cells to reduce damage in the spinal cord, and possibly promote regrowth. One drug, riluzole, protects neurons from an influx of sodium. Sodium is a trigger that kills off cells that are damaged, such as those hurt by spinal-cord injuries.
Early studies in mice produced "astounding" results when the drug was applied after spinal-cord injury, Dr. Fehlings said. "It reduces the extent of the injury by about 50 per cent," he said.
Another drug, Cethrin, blocks a molecule that also kills off injured cells. The first phase of drug trials produced a 30-per-cent improvement in neurological recovery, well above the norm of 5 to 10 per cent. A year after treatment, one paralyzed man was able to move his hand, regain some bowel and bladder control and reposition himself in a wheelchair. The drug will enter randomized clinical trials this year.
"This is not a home run," Dr. Fehlings says. "It's a step in the right direction, but for somebody who can't even move their hands or has no bowel or bladder function, restoring some of this allows major improvement."
While Dr. Fehlings doubts there will ever be a true "cure" for the neural damage sustained in spinal-cord injuries, trying to attain that goal can create great benefits. "Even a relatively small amount [of recovery] can have a huge impact."
Q&A
Most influential role model:
My mentor in neurosurgery and spinal-cord injury, Dr. Charles Tator.
Best-kept secret in the research district:
Toronto is becoming the "Medici Court" of biomedical research of the 21st century - an incredible talent pool.
Your favourite place in Toronto:
I love High Park and the proximity to the waterfront of Lake Ontario.
Toughest part of your job:
Realizing that despite my best efforts, I can't always save people's lives or impact on their disability.
Favourite quote:
"I am a lucky man and the harder I work, the luckier I get."
Who shares your home:
My wife, Darcy, who is an academic developmental pediatrician at Bloorview and our son Nick, age 16. Our daughters Tara, 21, and Lauren, 19, are at university.
DAVID JAFFRAY: IMAGE MAKER
Rocking the radiology world
Dr. Jaffray is the head of radiation physics at Princess Margaret Hospital
At right: Dr. Jaffray strums a tin-and-wood guitar he made with his son, Alexander.'Too little," David Jaffray says, referring to what humans know about cancer tumours. "Way too little, considering how big a problem it is."
And yet, when sick people seek treatment, doctors have to act. "You have to treat them without the complete picture," Dr. Jaffray says.
As a physicist with the University Health Network, Dr. Jaffray is finding ways to fill in that picture. At the turn of the century, he developed an imaging system that allowed doctors to watch how a patient responded to treatment. That revolutionary targeting system is now used in 80 per cent of imaging systems.
"The human body doesn't take the same shape in two seconds apart, let alone two years apart," Dr. Jaffray says. This new system can essentially change the radiotherapy target field as a person breathes.
One theory says this tailored radiation treatment will produce better results. But Dr. Jaffray thinks that it will also help reveal when the radiation treatment isn't working, allowing patients to stop that treatment and pursue other options.
But for him, this advance prompted a question: Should doctors change their methods to match the technology?
The technology for "adaptive radiation therapy" - altering treatment as the situation changes - is being refined, but Dr. Jaffray says traditionalists will be hard to win over. Interventions like radiation are extremely serious and are rarely ceased early.
Yet the possible impact of adaptive techniques - which could require changing treatments on the fly - makes him believe doctors should embrace the technology and consider trying more fluid approaches to treatments.
"Unless we start to explore the use of them, I don't think new innovations in biology will be able to impact patients," he says. "... I think we'd all love to hear a magic bullet, and I guess I'm not willing to wait for one."
A number of Dr. Jaffray's projects in 2008 will push that bid further. His research team will try to improve imaging so cancers can be more accurately targeted, and continue using computer simulations to see if patient treatments should be redesigned.
Plus, he is exploring how nanotechnology can be used to make cancers more sensitive to radiation, with a paper expected to be published in spring.
"What's cool about Toronto right now, there are a number of hot areas that just taste like they're all connected somehow," Dr. Jaffray says. "Cancer, imaging, stem cells. You get the feeling that something's going to come out [of it]."
Q&A
Your one-line response to "So, what do you do?"
I use physics to help treat cancer patients.
Most influential role model:
My dad.
What you always forget about your specialty area:
To say "nuclear" not "nucular."
Best-kept secret in the research district:
It wouldn't be a secret then, would it?
What you do to forget about work:
Go north.
Your exercise regime:
Walk fast.
Average time you maintain a New Year's resolution:
Never made one.
MOLLY SHOICHET: THE REGENERATOR
Spinning ideas to save spines
Dr. Shoichet is a professor at the University of Toronto, much of her work dedicated to cellular and biomolecular research.
At right: Dr. Shoichet with her two boys, Sebastian, right, and Emerson.
Adamaged spine is like a no man's land, the injury forming a core impact zone that widens into a region of pain and loss. Or it's like a bombed-out highway, the control centre - the brain - cut off from the rest of the body.
No matter how Molly Shoichet explains it, her deft hands drawing stick figures on the paper before her, the optimism in her voice doesn't waver: There could be a way to repair it.
Dr. Shoichet holds the Canadian research chair in tissue engineering, and according to Peter Lewis, vice-dean of research in the faculty of medicine at University of Toronto, she is a world leader in the field of regenerative medicine.
Her team is currently developing a gel that can be pumped full of drugs or stem cells, and then injected into the spinal cord. Unlike drugs delivered with a liquid, these gel drugs aren't spirited away via spinal fluid, and the gel prevents spinal fluid from escaping into the body. Early tests in rats show that the gel performs much better than a liquid drug.
"If we get [the drug] right where it needs to be, you don't get all that related toxicity," Dr. Shoichet says, referring to the damage that can be wrought when spinal fluid escapes into the body.
Then there is her work building a hydrogel to act as scaffolding for damaged spinal cords. This cylinder of special plastic could coax damaged nerve-cell lines called axons to grow along their original paths, to reconnect, to regenerate, while protecting them from the body's growth-inhibiting chemicals. "That concept was out there, but what we've done, which is new, is the engineering," Dr. Shoichet explains. "We're trying to use materials that make sense. When it was first done, they were using chemicals used in carpets."
When she was working with polymers at a leading stem-cell lab in the United States, Dr. Shoichet had no concept of the intricacies of spinal-cord research.
Now, she says, her dream is to have a direct impact on patients, although she quickly points out that these treatments probably won't work for everyone.
"If they can't walk out, at least we can give them better quality of life," she says. "Walking is a big step. ... It's more realistic to think about one thing at a time."
As if all that isn't enough, Dr. Shoichet is also finding ways to beat breast cancer. In her work with cancer drugs, she is creating nanoparticles that are the right size and chemistry to circulate in the body long enough to track down metastasized breast cancer, get through the cancer's walls and deliver drugs such as Herceptin right to the tumour.
"It works beautifully in the lab," she says. "Now, we have to demonstrate it works beautifully with animal models." That work involving mice will begin this year, with results emerging later in 2008.
Q&A
Most influential role model:
I have several for various aspects of my life, but my most influential role model is definitely my mom, Dorothy Shoichet.
Your favourite thing/place/activity in Toronto:
I love going to the zoo. With two kids (and being a kid at heart), I love taking advantage of the many kid-friendly places. We love going to the ROM as well.
How you forget about work: I love to spend time with my children and get involved in their lives, such as coaching their soccer teams or taking them skiing.
Your exercise regime:
Not good enough! I do try to stay active, but balancing family and work commitments seems to take away from consistent exercise (I should put this on my New Year's resolution list - again).
Who shares your home:
My supportive husband, Kevin Bartus, and my two beautiful boys, Sebastian and Emerson.
TERRENCE M. YAU: PUMP MAN
Looking for the heart of cell matters
Dr. Terry Yau is a cardiovascular surgeon, the director of research, division of cardiovascular surgery at the University Health Network and associate professor in the department of surgery at U of T.
At right: Dr. Yau by the Harbourfront, where he and his family like to take walks.
Few patients are truly glad to see Terry Yau. He may be kind and thoughtful, but this heart surgeon is also many people's last hope. And all too often, he has to explain there's nothing he can do. A lack of donors means 99 per cent of potential transplant recipients don't receive an organ. Others can't have surgery because of complications. "It's a miserable life," Dr. Yau said. "Instead of living, they're just waiting to die. That's the thing that I hate the most."
So Dr. Yau is finding new ways to help. At the Peter Munk Cardiac Centre, he is researching turning bone-marrow stem cells into preliminary heart cells. If successful, these "supercells" could be injected into a damaged heart area, where they would make the full conversion from heart-like stem cell to a regular heart cell. "Ultimately, the idea would be to rebuild a completely normal heart," Dr. Yau says.
Toronto researchers have long been interested in stem cells, even though other researchers often regarded their early work as crazy. In 1996, researchers at the Toronto General Research Institute and University of Toronto were the first to show a heart's pumping function could be improved by transplanting cells instead of a whole heart. Then in 2001, a separate finding showed that modified cells could boost blood flow. Now, the method that was once thought of as crazy is an accepted fact.
Late last year, Dr. Yau announced a new advance: The genetically modified supercells work in rats. This year, his team will test them in pigs. If that works, testing will progress to humans.
In the meantime, Dr. Yau is hoping to combine two current therapies to gain better recovery rates for patients. First, a laser would punch holes in the heart muscle - a system used in the United States to improve blood flow through blocked muscle - and then unmodified stem cells would be transplanted into the prepared zone. If the therapy is approved by Health Canada, Dr. Yau is aiming to start trials involving the genetically modified supercells later this year.
Through his work, Dr. Yau hopes to change the current reality of heart failure, which strikes 500,000 North Americans each year. "You can't reverse [a heart attack] no matter how many bypasses you put into them," he says. "Heart attacks are always a permanent thing."
But with these new approaches, Dr. Yau is hoping to change that reality, make hearts repairable and have some good news the next time someone knocks on his door.
"[A patient] may not feel like she's 20 years old again, but she'll be able to go walking with her family, go shopping and live better," Dr. Yau says. "You or I don't need a super heart. All we need is a normal heart that doesn't get worse."
Q&A
Most influential role model:
Two of them - Dr. Richard Weisel, who knows every aspect of cardiac surgical research inside out, and Dr. Tirone David, who can perform any operation ever devised in cardiac surgery.
Best-kept secret in the research district:
Even researchers working on new treatments for heart disease will (occasionally) eat pizza.
How you forget about work:
Come home, open the door, and say, "Daddy's home!" A hug and kiss from our five-year-old will instantly wipe the day's little aggravations from my mind.
Favourite quote:
"Imagination is more important than knowledge." - Albert Einstein.
Exercise regime:
Walking. I speed-walk through the hospital corridors and like long walks with my wife and daughter on weekends when the weather co-operates.
Average duration of New Year's resolutions:
I made one resolution not to make any more New Year's resolutions and have kept that for decades.
JONATHAN RAST: CURIOUS URCHIN
Seeking answers down the evolutionary ladder
Dr. Rast is a scientist at Sunnybrook Health Sciences Centre, where he researches developmental biology and immunology.
At right: Dr. Rast looks for fish to add to his home aquarium.
Nature can be deceptively simple. Take the humble sea urchin, for example. Existing on Earth for hundreds of millions of years, these spiny sea creatures were left behind in the evolution of immune systems, but they are far from simple, immunologist Jonathan Rast says.
"The sea urchin has an amazingly complex immune system," says Dr. Rast, who specializes in studying sea-urchin larvae. "They have their own separate solution to dealing with immunity problems. It's a gold mine of new ideas."
Every multiple-celled organism needs an immune system to recognize and block disease-causing micro-organisms called pathogens. By studying different systems, scientists can find novel solutions to immunity problems.
The hot topic at the moment, Dr. Rast says, is a type of receptor known as the gatekeeper of innate immunity. Called a "toll-like" receptor because of its close relation to toll receptors first found in fruit flies, these developmental genes recognize and bind to pathogens. Most animals have about 10 of them. Humans have nine. The sea urchin has about 200.
Researchers were surprised to see so many in the sea urchin and are hoping to now figure out how these receptors work, both in the animals and in humans.
Because sea urchins are a sister group to vertebrates, some information will be directly transferable, while major differences may offer up ideas for new antibiotics. Long-term results could help understand how immune systems go awry, as happens with leukemia, and find ways the human immune system can better attack intruder cells.
"Somehow our immune system evolved out of this system," Dr. Rast notes. "... If you study it closely enough, [you]'ll find things you would never think of on [your] own."
In 2006, Dr. Rast co-wrote a paper that showed the genome of the sea urchin was more closely related to humans than suspected: The urchin shares 7,077 of its 23,300 genes with people, which is a much greater proportion than occurs with the more commonly studied fruit fly. Yet, even in an eminent immunology hub such as Toronto, life as a sea-urchin specialist can be tough.
"People are interested in it, but often have a hard time seeing what you're doing because you're not working on a particular disease," Dr. Rast says.
"Even though I'm in some ways the oddball, in the end I'm studying the same genes. ... Sometimes just looking at something very different will lead somewhere you can't predict. If everybody was looking at the same thing, we wouldn't get anywhere."
Q&A
What you always forget about your specialty area:
Nothing in particular about my specialty, but I constantly forget my glasses by the microscope.
Your favourite activity in Toronto:
Looking through aquarium stores for interesting marine invertebrates.
What you do to forget about work:
Play guitar and build robots with my son.
Toughest part of your job:
Maintaining confidence in your chosen research direction in the face of criticism from both self and colleagues.
Favourite quote:
"Nothing in biology makes sense except in the light of evolution." - Theodosius Dobzhansky.
Your exercise regime:
Chasing my children around the house to get them ready for school.
Who/what shares your home:
Another immunologist, two kids, two cats, three fish and a bunch of invertebrates, including a pet sea urchin.
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OACRS
‘You don’t just think about the child, you think about the parent’s quality of life too’
Friday, January 04, 2008 -- Natalie Miller
Pat Small won’t soon forget the call she received on her cell phone while dining at an Ottawa restaurant.
Her grandson, then about one year old, was diagnosed by a doctor as “blind as a bat.”
“That was quite shocking,” says the Ottawa grandmother.
She says her daughter suspected when Jackson was born he had vision problems because he had trouble focusing and looked at the lights instead of his mother. It wasn’t until about a year later he was first diagnosed with a visual impairment. “So many things took so long,” says Pat regarding a proper diagnosis for her grandson.
After a MRI was ordered, a diagnosis from the Children’s Hospital of Eastern Ontario determined Jackson a thin myelin and epilepsy. An autism diagnosis came later. Pat says waiting was the most frustrating part of learning her grandson had special needs. “When Jackson was born his back was stiff and we thought he would never sit up.”
With the support of his parents who advocate strongly on Jackson’s behalf and the therapies and supports he’s received through the Ottawa Children’s Treatment Centre (OCTC), private Intensive Behaviour Intervention therapy for his autism and the support of another agency, Jackson has accomplished many milestones.
Pat and her husband, Calvin, recently took part in a grandparents’ support group offered through the OCTC. The goals of the workshop are to provide the opportunity for grandparents to meet with other grandparents to discuss and share concerns, to learn about programs and services available to their grandchildren and to discuss helpful strategies that enable grandparents to be supportive to their children and their families.
“They’re totally great there,” says Pat about OCTC staff. “It was really, really helpful,” she says about the workshop. While Jackson will be four at the end of January, Pat says she and Calvin still benefited from attending the workshop. She imagines it’s even more valuable for grandparents of grandchildren who’ve just been diagnosed.
Calvin says having a grandchild with special needs is “one of these things you have to accept. It was a state of concern” initially, he says. “You don’t just think about the child, you think about the parent’s quality of life too.”
— part one of a two-part series
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Star
Top 10 false health scares
Jan 04, 2008
Condensed from the American Council on Science and Health's list of medical stories that made us worry unnecessarily in 2007:
1. The (Unfounded) Scare: People who eat the most sodium-nitrite-containing meats, such as hot dogs or bacon, are more likely to have chronic obstructive pulmonary disease (COPD) compared to those who eat none or very little. By the late 19th century, scientists had figured out sodium nitrate acted as a preservative in meat.. In the 1920s it was discovered that sodium nitrite, a breakdown product of sodium nitrate, did the same thing more effectively and, by the 1950s, research had also shown that nitrite prevented germination of the bacterial spores that cause botulism in canned goods.
Origin of the Scare: In 1970, a paper in the journal Nature concluded that nitrites reacted in the body with other agents in food to form nitrosamines, substances know to be animal carcinogens. Rodent studies have shown a link between nitrite consumption and reduced lung function. In April, a new study in the American Journal of Respiratory and Critical Care Medicine concluded that eating cured meat was directly linked to an increased risk for COPD.
The Bottom Line: Nitrites have been used to cure meat for almost a century with no evidence of any risk to human health. Studies showing nitrites to be harmful have been done in high-dose animal experiments not comparable to the small amounts to which humans are exposed. Also, nitrite levels in cured meat have dropped by 80 per cent since the 1970s and vitamin C is now added to cured meat to prevent the formation of nitrosamines.
2. The (Unfounded) Scare: Lipstick contains toxic levels of lead, which can cause infertility, miscarriage and brain damage. Pregnant women and fetuses are especially at risk.
Origin of the Scare: The Campaign for Safe Cosmetics, an environmentalist group, tested more than 30 lipsticks in four cities for lead and found more than half had detectable levels of lead. The group sent out a press release saying one-third of the tested lipsticks exceeded the U.S. Food and Drug Administration's 0.1 ppm limit for lead in candy – since there is no standard for lipstick. An email chain letter hyped the fear, warning "if your lipstick stays on longer, it's because of the higher content of lead."
The Bottom Line: Comparing the lead guidelines for something edible, such as candy, to lead in lipstick is not an accurate technique. At high levels, lead is toxic, but there is no evidence the small amounts in lipstick pose any threat to human health.
3. The (Unfounded) Scare: Vaccines, specifically their thimerosal content, cause autism. There have been years of controversy over childhood vaccines, especially the MMR (to combat measles, mumps, and rubella) on autism, even though the MMR vaccine never contained thimerosal.
Origin of the Scare: In 1998 a paper by Dr. Andrew Wakefield and colleagues, published in The Lancet, claimed to have found a link between the MMR vaccine and autism. Eventually, The Lancet and several of the study's authors withdrew their support of Wakefield's article due to its questionable assumptions and weak findings, but Wakefield, later revealed to be working for the lawyers of parents suing vaccine makers, stuck to his claims. In Canada and the U.S., vaccines containing the preservative thimerosal have been the main targets of anti-vaccine paranoia. Thimerosal, used since the 1930s, is partially composed of ethyl mercury and because mercury is a known neurotoxin, the public became fearful of the exposure associated with vaccines.
The Bottom Line: There are no scientific data to support the theory that vaccines cause autism. Vaccines are a powerful and crucial method of preventing life-threatening disease, and attacking them jeopardizes the public's health in a profound way.
4. The (Unfounded) Scare: Breathing in ultra-fine particles (UFP) released from office printers causes health problems comparable to those caused by secondhand smoke.
Origin of the Scare: A study published in the American Chemical Society's Environmental Science and Technology journal tested emissions from 62 different printer models. Results showed 27 per cent were labelled high emitters. The study also found that indoor particle counts in office air increased fivefold during work hours due to printer use. The UFP are considered pollutants, and because they are so small there were claims that they could be inhaled deep into the lungs and even enter the bloodstream. A similar study was performed in Canada for the CBC. In this study, 27 per cent of the printers were considered high emitters; that is, printers that emit more than 10 times the UFP normally found in air.
The Bottom Line: There are no indications that UFP emissions from laser printing systems are associated with special health risks. To compare the health risks of sitting next to an office printer to those of secondhand smoke (even though the effects of secondhand smoke, as opposed to the effects of smoking, have themselves sometimes been exaggerated) is false and irresponsible.
5. The (Unfounded) Scare: Valentine's Day flowers shipped from Colombia were doused in chemicals including pesticides and fungicides. Colombia is the second largest exporter of flowers in the world, with exports around $1 billion worth of cut flowers every year.
Origin of the Scare: Although flowers are required to be bug-free before entering the United States, they are not required to be clear of chemical residues, as are fruits and vegetables. Because Colombia flower exporters did not have to rid the flowers of chemical residues, there were claims that using pesticides and fungicides was "encouraged." These chemicals that can sometimes remain on imported flowers have been shown to cause cancer and neurological disorders in high-dose animal experiments.
The Bottom Line: There is no evidence that exposure to trace levels of pesticides causes any adverse health effects. High doses of the chemicals can pose a threat, and so the safety of workers must be made a top priority. Without these chemicals, the Colombian flowers would be vulnerable to pests and turned away at the U.S. border, which would cause economic hardship for those in the flower business.
6. The (Unfounded) Scare: Red meat and processed meat, such as bacon or hot dogs, increase risk of colorectal cancer and also increase women's risk for breast cancer.
Origin of the Scare: The breast cancer scare was based on one study published in the British Journal of Cancer and another in the Archives of Internal Medicine. Both studies claimed that women who ate red and processed meat regularly were at an elevated risk for breast cancer. The link to colorectal cancer came from a report by the World Cancer Research Fund and the American Institute for Cancer Research, which said high consumption of red meat and processed meat were dangerous and increased cancer risk.
The Bottom Line: The American Institute for Cancer Research assumes a diet-cancer risk exists, then cherry-picks research that supports this notion. Red meat and processed meat often have a high fat content, so if you eat them too often you could get fat – which has been shown to be a risk factor for several cancers, including breast cancer and colorectal cancer. A more accurate report would focus on how obesity as a whole can increase risk for cancer.
7. The (Unfounded) Scare: Phthalates, often found in soft plastic toys, leach out into the mouths of children, posing risks to their health. Phthalates are added to polyvinyl chloride (PVC) as a softener for plastic items such as rubber ducks, pacifiers, intravenous medical tubing, examination gloves, catheters, and blood storage bags. They are also used in nail polish to prevent chipping and in perfumes to help the fragrance last longer.
Origin of the Scare: Concerns over phthalates and human health have been around for a decade or so. Phthalates are found in a wide variety of consumer products. Recently, kids' rubber ducks have become the poster child of the anti-phthalate campaign. The state of California passed legislation banning the use of phthalates despite opposition from the California Chambers of Commerce, California Retailers Association, and the American Chemistry Council.
Media Coverage: Because of the ban in California, many media outlets there ran large pieces on the story. The Los Angeles Times printed an article headlined "Chemical stirs up controversy" in which Rachel Gibson, a lawyer for Environment California, stated,"when a child puts a phthalate-laden teether in her mouth, it's like sucking on a toxic lollipop."
The Bottom Line: Phthalates have not been shown to be harmful to humans at low-level exposure – only to rats at high exposures. They are useful chemicals found in a wide range of everyday consumer goods so it's not surprising most of us have detectable amounts of it in our blood. But the presence of a chemical does not necessarily mean that it is harmful – remember, it's the dose that makes the poison.
8. The (Unfounded) Scare: Bisphenol A, or BPA, a component commonly found in hard plastics, causes cancer. BPA can be found in many polycarbonate products such as baby bottles, water bottles, sippy cups and pop can liners.
Origin of the Scare: An experiment published in the July issue of Proceedings of the National Academy of Sciences added to the ongoing BPA controversy. This study found that feeding BPA to female mice changed the colour of their babies' coats. The mice with brown coats grew up with healthy weights, while those with yellow coats grew up to be obese, with a higher susceptibility to cancer and diabetes. The Environmental Working Group attacked BPA, linking it to breast cancer, prostate cancer, obesity, and reproductive problems. Their data were based on animal studies.
The Bottom Line: The United States Environmental Protection Agency concluded BPA is safe and set a maximum acceptable dose of 0.05 milligrams per kilogram of body weight. Only workers exposed to BPA on the job have shown any significant effects, experiencing irritation of the eyes, respiratory tract, and skin. These symptoms resulted from inhaling BPA, not from ingesting it through foods and beverages.
9. The (Unfounded) Scare: Adding fluoride to tap water can cause health problems like fluorosis, abnormal thyroid function, lower IQ and osteosarcoma.
Origin of the Scare: The Environmental Working Group published an article in their August 2007 Bulletin claiming that "(e)ven the American Dental Association ... tells parents to avoid fluoridated water." The group also featured a study published in the Harvard journal Cancer Causes and Control, which linked fluoridated water to a rare bone cancer in boys.
The Bottom Line: The Environmental Working Group, which is stridently anti-chemical, neglected to mention the Harvard research is part of a much bigger project and that it is an "exploratory analysis" that will require scientific confirmation. In addition, the principal investigator of the larger study says the full study will not suggest an overall association between fluoride and osteosarcoma. The group also misrepresented the ADA's recommendations about fluoride and infant formula. The ADA says infant formula prepared with fluoridated water presents no health risk but may slightly increase the risk of fluorosis (mottling the teeth), which affects only the way teeth look, not overall health.
10. The (Unfounded) Scare: Fetuses exposed to perfluorooctanoate (PFOA) may have low birth weights. PFOA is a chemical used to manufacture Teflon and many other products. PFOA has been shown to be toxic to animals at high doses.
Origin of the Scare: In an study published online in August, researchers tested blood from 1,400 pregnant women in a Danish birth registry and determined that women with high PFOA levels gave birth to babies on average four ounces lighter than those born to mothers with low levels. All babies were still of normal weight. Another study, published online in July, tested the cord blood of 300 babies born at John Hopkins hospital in Baltimore. The babies with high exposures to PFOA were found to be thinner, with lower birth weights and slightly smaller heads.
The Bottom Line: PFOA is not actually present in Teflon; it is only used in the manufacturing process. Though high doses of PFOA are harmful to animals, the amount to which the general population is exposed is nowhere near comparable to the high doses used in animal studies. Additionally, studies of workers (who are exposed to much higher doses of PFOA than the general population) have not shown the same effects in humans that occur in animals.
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Globe
Racing to solve the puzzle of autism
TENILLE BONOGUORE
January 4, 2008
As Steve Scherer celebrates his 44th birthday today , he won't have to look far to count his blessings. There are his wife and two young children, the million-dollar research grant he will receive this month from the Wellcome Trust, and the satisfaction of seeing Science Magazine name the genetic studies he worked on Story of the Year for 2007.
But one thing remains out of reach, although he is getting closer to an answer each year: understanding the genetics of autism.
Every human genome is 99.5 per cent identical. The few changes are what make everyone unique. Some mutations make us better; others have no noticeable impact. Sometimes a change hits a critical gene, leading to disorders or disease.
"Everybody carries these changes. It's just a roll of the dice. Some lead to medical outcomes. Some don't," Dr. Scherer says.
The Hospital for Sick Children has been cataloguing genetic variations for a decade, creating a massive information bank called the Database of Genomic Variants, now known worldwide as the Toronto database. When American scientist Craig Venter became the first human to have his entire DNA sequenced this year, he came to Dr. Scherer to analyze it.
By cataloguing the differences between humans, or the "copy number variations," Dr. Scherer hopes to find what mutations predispose people to certain diseases. "It's arguably the hottest topic in science," he says. "We have no idea what we're going to find. Every time we look closer and closer, we find interesting things."
But his main focus is the spectrum of disorders known as autism. In a paper to be published this year, he shows that 7 per cent of autism cases share a certain variation in genetic copy numbers, involving specific regions of the chromosome. That means a couple of genes are definitely involved in autism, he says.
That knowledge can help develop faster genetic testing and better therapeutics, but he stresses that it does not solve the entire puzzle.
"Autism is a complex condition. It's a group of many different conditions. Some are single gene changes, some probably very complex," he says.
By using what's known as "discovery science" — a brute-force approach that basically throws a lot of ideas on the wall to see what sticks, as opposed to exhausting one idea before moving onto the next — he says entirely new avenues are opening up very quickly.
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Globe
Q&A: Steve Scherer
January 4, 2008
Area of research: Human genome and disease
Hospital/University: Hospital for Sick Children
Came to Toronto from: Windsor, Ontario
‘So, what do you do?': If I'm feeling chatty with lots of time to answer questions I tell them I'm a DNA doctor studying working on the human genome and studying the genes involved in autism. If I don't want to talk... Professor at the University.
Most influential role model: PhD supervisor, Dr. Lap-Chee Tsui, who discovered the cystic fibrosis gene and is current President of the University of Hong Kong.
What you always forget about your specialty area: Meiosis: how chromosomes pair and exchange DNA.
Most satisfying point of your career: Discovering copy number variation (CNVs) as the most common form of genetic alterations in human DNA.
What you expect in 2008: Sequence the genome of the most famous person in history, find more autism susceptibility genes, and then pick up the pace in the second and third quarter of the year.
Best kept secret in the research district: What MaRS actually stands for? How to win a Nobel Prize in Medicine (tongue in cheek since nobody in Toronto has one).
Your favourite thing/place/activity in Toronto: Saturday morning jog through High Park and Bloor West Village.
What you do to forget about work: Garden, sleep (although sleep is over-rated).
Best part of your job: Is that is not a job, it's a passion! I love the competition and energy.
Toughest part of your job: Keeping on top of the 200 emails I receive each day.
Most demanding aspect of medical research: Building a sustainable enterprise and the extensive travel.
Favourite quote: “Life is what happens to you when your busy making other plans” – John Lennon.
Exercise regime: Pick-up hockey, and running between meetings at SickKids, MaRS and the University.
Who/what shares your home: Spouse Jo-Anne and children Josef and Julianna.
Average length of New Year's resolution: Set time-limited (24 hour) resolutions it's the best way to keep them.
From a listmate
Autism cases still rise after thimerosal removed from vaccine
Provided by: Associated Press
Written by: Alicia Chang, THE ASSOCIATED PRESS
Jan. 7, 2008
LOS ANGELES - Autism cases in California continued to climb even after a mercury-based vaccine preservative that some people blame for the neurological disorder was removed from routine childhood shots, a new study found.
Researchers from the state Department of Public Health found the autism rate in children rose continuously during the 12-year study period from 1995 to 2007. The preservative thimerosal hasn't been used in childhood vaccines since 2001, but is used in some flu shots.
Doctors say the latest study adds to existing evidence refuting a link between thimerosal exposure and autism risk and should reassure parents that the disorder is not caused by vaccinations. If there was a risk, they said, autism rates should have dropped between 2004 and 2007.
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The findings show "no evidence of mercury poisoning in autism" since there was no decline in autism rates even after the elimination of thimerosal, said Dr. Eric Fombonne, an autism researcher at Montreal Children's Hospital who had no role in the research.
Some advocacy groups blame thimerosal for the impaired social interaction typical of autism. Nearly 5,000 claims alleging a vaccine-autism link have been lodged with the U.S. government, which is deciding whether victims should receive compensation from a government fund.
Dr. Daniel Geschwind, a neurologist at the David Geffen School of Medicine at the University of California, Los Angeles, said the focus now should be on exploring the causes of autism such as possible genetic links.
"Something else must be at play and we need to know what that is if we're really serious about preventing autism," said Geschwind, who had no connection with the study.
For their study, California public health officials calculated the autism rate by analyzing a database of state-funded centres that care for people with autism and other developmental disorders.
They found the prevalence of autism in children aged three to 12 increased throughout the study period. For example, 0.3 per 1,000 children born in 1993 had autism at age three compared with 1.3 per 1,000 children born in 2003. Similar trends were found in other age groups.
"These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California," the researchers wrote.
Results were published in January's issue of the journal Archives of General Psychiatry. The study did not explore why there was an increase in autism cases.
Federal statistics show about one in 150 children in the United States have autism, higher than previous estimates. Researchers say it's unclear if the increase is due to changes in how the disorder is classified or whether it's an actual spike.
Autism is characterized by impaired social interaction and communication skills. There is no cure, but early therapy can lessen the severity.
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