Friday, June 23, 2006
On June 3, 2006 a charity golf tournament was held at Deer Creek Golf & Banquet Facility in Ajax, Ontario to benefit TSC. The goal set out for the tournament was to raise a little money and raise a lot of awareness. The events honorary chair was Canadian funny man Dave Foley (Kids in the Hall & Newsradio) and hosted by Rick Campanelli (Entertainment Tonight Canada). Special guests included, Jim Flaherty (Finance Minister of Canada), John Yakubuski (MPP, Renfrew County), Holly Horton (TSN SportsCenter) and Bryan Mudryk (TSN SportsCenter).
Despite the rain filled day, all golf participates had a great time. Many golfers approached the organizers afterwards to say it was one of the best tournaments they have ever been to (and the most memorable).
The tournament goals were set and accomplished, approximately $5,000 was raised by this first time event and the amount of awareness raised was exceptional. Media coverage of the event included; Entertainment Tonight Canada, Star Daily, Canadian Business Magazine, Metro Durham newspapers, CHFI Radio Toronto, KX 96 Radio Durham, Pop Journalism Magazine and Rogers TV.
See photos in our Events Photo Gallery.
Sunday, June 18, 2006
Recently, Xi-Long Zheng, Ph.D. M.D., of the University of Calgary, was awarded a grant of $150,000 (US funds) from Tuberous Sclerosis Alliance for a three-year Tuberous Sclerosis research project.
The goal of the project is to determine the roles of tuberin, the gene product of Tuberous Sclerosis |
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| Complex, in vascular smooth muscle cells. Dr. Zheng is interested in how tuberin, one of two proteins responsible for TSC, regulates the growth of vascular smooth muscle cells. He hopes to prove that some TSC lesions are caused by abnormal growth of such cells. |
"If I am right, smooth muscle cells will be identified as the cell type contributing to TSC, and this will provide a therapeutic target at the cellular level," Dr Zheng states in an email interview.
"We have analyzed the data collected from patients and the laboratory findings in our basic research and found that various lesions, such as renal angiomyolipomas (or AMLs), facial angiofibromas and lymphangiomyomatosis in TSC patients are related to vascular smooth muscle cells," states Dr. Zheng. "These cells are the major component in the blood vessel and they do not proliferate under normal conditions. Our research using Eker rats (a unique animal model to study TSC) demonstrated that mutation of the TSC2 gene could induce abnormal growth of vascular smooth muscle cells. So, our research is to establish that vascular smooth muscle cells contribute to TSC lesions in some tissues and/or organs."
Dr. Zheng believes that identifying the specific cell type is critical. "I would say that this increased knowledge resulting from our research would bring a hope of cell therapy to people who live with TS," he states. "This may take at least three to five years."
This internationally competitive and peer-reviewed research award is, as far as Dr. Zheng knows, the first awarded to a Canadian researcher.
"I am confident that TSC research in Canada could significantly contribute to the improvement of care and treatment of TSC," states Dr. Zheng. "To date, the National Institutes of Health in the USA have spent billions of dollars on TSC research. What we need to do now is to establish at least one program combining basic and clinical research with patient care. We also need to urge the Canadian Institutes of Health Research (CIHR) to recognize our research weakness in this area and to take immediate action."
In a written response to Dr. Zheng's comment, Dr. Alan Bernstein, CIHR President, states, ''Our open grant competitions, which are investigator-driven and represent 70 per cent of CIHR research funding, encourage Canadian researchers to develop innovative proposals in a wide range of areas including Tuberous Sclerosis Complex.Successful applications are judged by a rigorous peer review system which abides by internationally accepted standards of excellence to allocate funds to this country's top health researchers. In addition, CIHR's 13 Institutes have developed strategic initiatives following broad consultation with various stakeholder communities. I would encourage Dr. Zheng and others who have an interest in Tuberous Sclerosis Complex to contact the relevant Institute (e.g. the Institute of Genetics) to pursue this important objective.''
CALL TO ACTION:
Contact genetics researchers at your local university to inquire about their interest in pursuing TSC research with the CIHR's Institute of Genetics. Advocate for increased Canadian research.
Sudbury Star (ON)
Greater Sudbury, Wednesday, July 5, 2006, p. A3
Boy bounces back
Terry Trypus battles often-fatal disease
Carol Mulligan
There's nothing shy about four-year-old Terry Trypus.
He excitedly welcomes a visitor to his home, grabbing you by the hand and leading you to the backyard to show off the family's new boat.
When an interview with his mother ends, the tow-haired youngster insists on a hug and a kiss - several times - before he'll let you go.
In between, he plays and fights with his two older brothers outside like any kid would, except for one big difference.
About this time last year, Terry's mother Suzanne feared her youngest son was going to die.
Terry is one of a million people worldwide with tuberous sclerosis, a disease at least as common as amyotrophic lateral sclerosis or Lou Gehrig's disease, but not nearly as well-known.
At least two children are born every day with the congenital genetic disease characterized by skin abnormalities and birthmarks, tuber-like growths in the eyes, brain and other internal organs, and varying severity of epilepsy and mental disability.
Suzanne said it was last June when Terry began suffering paralyzing seizures.
She and her husband, Kola, took the boy to a walk-in clinic, but were advised to rush him to hospital where he had a CT scan.
The scan showed the boy had a tumour in his left eye about the diameter of a pencil and a smaller mass in his right eye. He also had as many as 30 small tumours in his brain.
The non-cancerous growths are most commonly found in the eyes, mouth, lungs, heart, kidney and liver.
Terry's tumours, particularly those in his eyes, are inoperable because they are located in blood vessels, but their placement is fortuitous because they are not life-threatening.
Had they been located in a vital organ, it might be a different story.
Terry's disease was diagnosed at Sick Children's Hospital in Toronto.
"Honestly, I thought he was going to die," said his mother at their home in the Donovan.
Terry was eventually placed on anti-seizure medication and, while his mother has had to increase the dosage a couple of times, he's currently seizure-free.
Terry wrinkles his nose when asked if the 5 mL of valproate sodium he takes in the morning and evening tastes bad. But Suzanne says she gives the boy a glass of water to flush away the taste.
It's a small price to pay for the fact Terry may live a normal lifespan despite the disease.
Tuberous sclerosis has affected the boy's ability to learn. He had a difficult time writing, talking and colouring in junior kindergarten at St. David School last year.
Next year, he will attend senior kindergarten at either St. Andrew's or St. Raphael's, where there is special education for special kids like Terry, says his mother.
Suzanne wanted to go public with her son's illness to educate people about the disease.
"It was a shock to me," she says, and she would like to make people aware of it.
"I want them to know this disease is here."
She wants people to know that, if they have it, they are not alone.
In the meantime, Suzanne is planning to hold a march in downtown Sudbury in September - a year after her son's diagnosis. She's hoping many people will join her.
There is no cure for tuberous sclerosis, which often proves fatal.
But she would like people to contribute to fund research and raise awareness about the disease, which affects about one in 6,000-10,000 people.
Suzanne urges people who want to know more about the disease to visit the website www.tscanada.ca . Donations may also be made online.
