In the short time from 1998 until now, the achievements of Wegener’s Granulomatosis Support Group of Canada, now known as Vasculitis Foundation Canada, are profound to say the least.
Our Participation with the medical community
Dr. Simon Carette was presented a cheque for $10,000 at our annual March meeting to further his research in finding a cause, treatment and cure for many of the forms of Vasculitis.
A DNA study under Dr. Katherine Siminovitch, a research doctor at Mount Sinai Hospital, Toronto was launched in the spring of 2001. This is an ongoing project. Monies have been donated to this project along with encouragement that all Wegener’s patients participate.
An ANCA study under Dr. Robert Inman, a Rheumatologist at Toronto Western Hospital, Toronto was also given funds and the cooperation of many patients. The ANCA test is one of the very important diagnostic tools used to prove the existence of Wegener’s.
A number of patients, as well as Dr. Siminovitch and Dr. Inman, participated in the making of a documentary concerning cause and affect, along with the doctors’ efforts, for the life-altering problems with disease.
Our Public education involvement
Vasculitis Foundation Canada was featured on the CTV news in March 2009 for it’s efforts in promoting awareness about these forms of rare diseases.
Dr. Louise Vitou, a Nephrologist at Grand River Hospital, Kitchener and Donna Wall, a board member, were interviewed twice on Rogers Cable Television in the early life of the support group.
Once a brochure was developed, the awesome task of mailing a letter with a brochure to nine different medical specialty doctors across Canada was undertaken
Numerous newspaper articles have been written as the group developed.
A combined effort has been made with the Kansas City support group, now known as Vasculitis Foundation. To ensure the sharing of knowledge, we developed a dual membership with them which enables all members to a worldwide source of help.
The change-over from Wegener’s Granulomatosis Support Group of Canada to Vasculitis Foundation Canada involved many adjustments. New brochures, a new logo and an outreach to many more families coping with a form of Vasculitis have enabled many patients with much rarer diseases to join in a common fight.
We have held support group meetings since the conception of our group. We started with only a handful of people now growing to large numbers. We hold three events each year, our General meeting in March, an informal BBQ in June and our Fall meeting in October. Along the way we have supported other ventures such as walks, golf tournaments and conferences. Below is a small overview of these events as they occur.
Annual Meeting – March 2009
This year we were honoured to have Dr. Simon Carette as our guest speaker. Dr. Carette is the director of the Vasculitis Clinic at Mount Sinai Hospital. This clinic, the largest of its kind in Canada, serves as a referral center for patients from all over Ontario and other provinces suffering from various vasculitides, including Wegener’s granulomatosis, Churg-Strauss, Microscopic polyangitis, Polyarteritis nodosa and Takayasu arteritis to name a few. We had a great turn out, with a full audience.
Pedal for a Purpose a huge success!
The event was a huge success. Not only did they have great community support, they managed to have enough sponsor donations to provide every participant with a prize. As well they raised awareness of Vasculitis through two newspaper articles and a report on a local TV station. Below are some other fun statistics for the day.
- They traveled 1869.1 kms which is the distance from Vancouver to Calgary and return.
- They burned a total of 30,057 calories which is about 50 Big Mac’s
- They had 6 teams and 66 people registered
- They raised over $4,800 for Vasculitis Foundation Canada
Way to go to all the participants!
Pedal for a Purpose
June 6th Bike-A-Thon in Vancouver
Sharpe and her Steveston Community Centre colleagues held a fundraiser that benefited the Vasculitis Foundation of Canada. Pedal for a Purpose was a 12-hour indoor cycling event scheduled on Saturday, June 6 from 8 a.m. to 8 p.m.
Looking at fitness instructor Cheryl Sharpe, what you see is a slim, attractive woman who exudes health and vitality.
However, her healthy exterior belies the fact that the 34-year-old lives with Vasculitis, a rare disease that could kill her. Vasculitis is a family of 15 rare diseases.
Sharpe suffers from the same disease that recently took the life of actor John Travolta’s son, 16-year-old Jett. (He suffered from Kawasaki Disease — it is the leading cause of heart disease in children).
“I have Wegener’s granulomatosis (WG) and that means it affects my upper respiratory tract, my throat and lungs,” says Sharpe. “It typically hits Caucasians, people who are middle age and there is no known genetic factor involved.
Pedal for a Purpose
A clear purpose
Mark Patrick photo
Buy Richmond Review Photos Online
By Martin van den Hemel – Richmond Review
Published: May 15, 2009 1:00 PM
Updated: May 15, 2009 1:25 PM
by Martin van den Hemel
Cheryl Sharpe figured she’d been hit by the flu bug the day after completing a triathlon in May of 2005.
She was a fitness instructor, just 30 years old, and felt on top of the world, and initially figured she was just drained by the exertion from the swimming/cycling/running event.
But after a week of flu symptoms, things got worse. She suddenly felt joint pain, one day unable to lift her left shoulder, the following day her right, and then it progressed to her knees.
“By the end of that second week, I was coughing up blood and basically having a hard time even walking up stairs. I was crawling because of the joint pain and then having trouble catching my breath,” the Steveston Community Centre facility co-ordinator said.
Three weeks later, Sharpe, born and raised in Delta, was diagnosed with vasculitis, a rare auto-immune disease in which the body’s immune system attacks its own blood vessels, causing inflammation. It results in a wide range of symptoms from joint pain to severe headaches as a result of organs being deprived of blood.
Vasculitis comes in 15 different forms, one of which earlier this year claimed the life of John Travolta’s son. The cause is unknown and Sharpe has no family history of the disease.
But after working with 13 different specialists, and taking a regimen of very powerful drugs during chemotherapy, things soon took a turn for the better for Sharpe.
Today, Sharpe is in remission, and has regained her previous form after the disease sent her body into a tailspin that saw her lose 30 pounds.
She’s a firm believer that fitness helped her body battle the disease.
Next month, Sharpe and her Steveston Community Centre colleagues are holding a fundraiser that will benefit the Vasculitis Foundation of Canada. Pedal for a Purpose is a 12-hour indoor cycling event scheduled for Saturday, June 6 from 8 a.m. to 8 p.m.
What has this experience taught you about life?
“I’ve learned that I was always this person that had all my goals set out, my life’s going in a straight line and in the last three, four years, I’ve had many of twists and turns in my road and I’ve had experiences and new goals set that I never would have possibly thought I’d be doing and I would not change a single thing of my life. I’ve had opportunities to meet new people and to learn about how strong I’ve become. You just get this fight in you…My husband (Paul) and I, we treat this as our disease. This is not just me, on an island, by myself. We tackle this together.”
How will this experience help you relate to other people with challenges?
“I teach fitness and I teach a lot of people. I currently teach a lose-weight class. Especially to new beginner people out there, I can relate because I’ve always up until four years ago been an athlete. I’ve never been out of shape. I was always a strong person. (But) I’ve gone to ground zero, lost 30 pounds, no muscle mass. I know it’s hard to make the first steps and get off the couch and get active again.”
What will this fundraising be used for?
“We’re trying to right now to build awareness. Just because it’s not really talked about or heard.”
“We’re trying to get the word out about it. A lot of people aren’t getting diagnosed soon enough, it’s just so rare. Talking about it, getting it out to more people, it might help somebody that’s struggling, to be diagnosed with the disease.”