Press release: Toronto December 10th, 2001
A new research fund, called “Laura’s Hope” was launched at the annual convention of the Canadian Association of Professional Speakers (CAPS) in Toronto. A lunchtime crowd of 275 speakers, trainers, and consultants pledged over $150,000 to match the seed money contributed by the founders.
The fund is specifically targeted at Huntington Disease (HD), where Canadians are on the leading edge of a global initiative to find a treatment. Canadian research breakthroughs in this area have already made major contributions to global teams working on Alzheimer’s, Parkinson’s, ALS and other diseases.
Huntington’s, sometimes called ‘Woody Guthrie Disease’, is an inherited neuro-degenerative genetic brain disorder. There are about 35,000 people in North America living with Huntington’s and it is estimated that it touches 1 in every 1,000 Canadians who either are at risk for it, have it, or are relatives and caregivers to someone who does.
A genetic flaw basically causes brain cells to start dying around age 30. This leads to a steady deterioration in both mental and physical abilities, including loss of balance, speech, and muscle control. Today there is no treatment, and it usually proves fatal by the mid-40’s.
“The launch of this fund is very exciting”, says Elaine Taylor, Board Chair of the Huntington Society of Canada. “Huntingtons is probably further along the trail of finding a treatment than any similar disease, and once this domino falls others are sure to follow in short order. And we are incredibly close to an effective treatment”.
Dr. Gillian Bates, of Kings College, London is one of the world’s leading experts on hereditary brain disorders. She agrees when it comes to Huntington’s research:
“Things are really accelerating. We in the research community are convinced that many new
breakthroughs are just around the corner. Everything is now in place for finding a cure.”
“We may be able to stop HD dead in its tracks” says Dr. Michael Hayden, Professor of Medical Genetics, and Director of Molecular Medicine & Therapies at the University of British Columbia.
Dr. Hayden is a highly respected researcher and world leader in the fight against HD whose work has lead to several major breakthroughs over the last few years.
Laura’s Hope is named for Laura Evans who died in October of 2001 of the rarer juvenile form of the disease at 28 years old. Laura’s parents, Warren and Arlene Evans of Georgetown Ontario explain that “Laura’s great hope the last few years of her life was that a treatment for this disease would be found before it claimed her older sister Andrea, now 31, who is now entering the early stages of the normal ‘adult’ version of HD.”
“We’ve obviously been watching the research, and realized a year ago that it was now at the point where a relatively small amount of money could make a huge impact. There are numerous very promising treatments now lined up just waiting for clinical trials.”
Working with the Huntington Society, they established Laura’s Hope as an independent component of the Society’s NAVIGATOR Coalition, their research arm. Laura’s Hope will focus solely on accelerating clinical trials, with 100% of its resources going directly to funding activities that that otherwise would not getting funding.
Warren Evans is a leading Canadian trends analyst and professional speaker, and a prominent member of the meetings and business education industry. Which is why the fund was launched at the CAPS convention.
Asked about the overwhelming response at the convention, he said that while it’s natural that anyone would go first to their home professional association to seek help, most speakers and trainers are drawn to the business, in part, by the appeal of being able to make a difference in the lives of people and organizations. He thinks this opportunity to make a very real, and very big, difference resonated strongly with this particular business group.
“Our goal is to raise a million dollars this year”, he says, “which is not very much money in the world of medical research. But Canada has spearheaded numerous major advances while the Huntington Society has a total research budget of $300,000 a year. We can almost double that over the next 3 or 4 years, substantially accelerating the race for an effective treatment. We are very, very close.”
“As has happened so often in medical history, it is a small group of dedicated and talented scientists working on a shoe string budget to cure a little-known disease that may well unlock the key to a whole host of hereditary disorders. Canada is on the leading edge of accomplishing this feat in the immediate future, and we wanted to do whatever we could help make it happen.”
Warren can be reached at 800 – 364 – 3205, or 905 – 877 – 1530 laurashope@futureofwork.com
Huntington Society, Kitchener Ontario, 800 – 998 – 7398 or 519 – 749 - 7063
