Hootenanny raises $50,000 for Lou Gehrig’s disease research

When Heather Snell arrived at Robarts Research Institute to deliver a $50,000 cheque for amyotrophic lateral sclerosis (ALS) research yesterday, she brought an entourage of her 30 closest friends.

And because each friend had a hand in raising the donation through a barn dance fundraiser called Heather’s Hootenanny for Hope, Snell made sure they each touched the cheque before handing it over to Robarts scientist Dr. Michael Strong, a world leader in finding a cure for ALS, also known as Lou Gehrig’s disease.

Snell, a 46-year-old mother of three, was diagnosed with ALS two years ago. What started as slurred speech has progressed to the point where she is unable to speak, but that hasn’t limited her ability to communicate. Snell typed up a speech on her laptop and asked her long-time friend Libby Barrie to read it to the gathering on her behalf.

“Dr. Strong, make haste slowly… and work to find a cure for ALS,” she said. “We have already secured a barn for Heather’s Hootenanny for Hope 2009 and will do all we can to help you in your work.”

Over 2,000 people and more than 200 volunteers braved a torrential downpour last August to attend the 2008 fundraiser, which was held in Paris, Ont. The first Hootenanny was held last year in North Dumfries Township, Ont., and raised $30,000 for Strong’s research.

“I am completely honoured to be part of the circle that has brought this fundraiser to life,” said Barrie, who met Snell in their small community of Ayr, Ont., through a shared interest in music.

“Heather is a woman of grace, wit, and resilience. When asked about her disease, Heather says ‘I can cry or I can laugh – I choose to laugh’… I am inspired more by her than any other friend.”

Currently there is no cure for ALS, which destroys the motor neurons that control voluntary muscle movement. However, according to Strong, in the last year alone there have been several advances in understanding the disease. The donation from Heather’s Hootenanny will go towards advancing that research.