A London, Ont., foundation aimed at finding a cure for a rare hereditary disease has launched a new and virtual raffle fundraiser amid the novel coronavirus pandemic.
Dave McIntyre, the president of the Bethanys Hope Foundation (BHF), spoke with 980 CFPL’s Mike Stubbs on London Live Friday and called the pandemic a “nightmare.”
“We had to cancel four cornerstone projects… that’s what feeds research.”
BHF’s new raffle fundraiser, BHF-Catch the Ace, kicked off Friday and is aimed at funding for Metachromatic Leukodystrophy (MLD) research.
McIntyre and his wife Lindey started the foundation after their seventh child, Bethany, died of MLD, a rare hereditary disease that affects both the central nervous system and the peripheral nervous system, 20 years ago.
“These children are born completely normal… Bethany had a delay in walking but the paediatrician told us, ‘she’ll start walking, don’t worry about it,'” McIntyre said.
Lindey took Bethany to countless appointments, and finally in the summer of 1995 at SickKids hospital, “… an old doctor who was shaking as much as Bethany told us she has Metachromatic Leukodystrophy,” McIntyre added.
“We asked, ‘it’s not fatal, right?’ and when he didn’t answer, that’s when it sunk in.”
Bethany fought for five years and passed away on July 17, 2000, at seven years old.
There was no cure back then and 20 years later, there is still no cure today. The McIntyres want to change that through fundraising for research, which led them to their most recent idea, BHF-Catch the Ace.
McIntyre says they’ve had the idea to do a paper version of this game in malls and arenas, where they would sell tickets and do draws on weekends, but it never worked out due to a lack of volunteers.
Then, shortly after the COVID-19 pandemic hit in March, they found out an online version was available.
The foundation sent in an application to the Alcohol and Gaming Commission of Ontario and received approval.
“(Friday) would mark the 25th anniversary of Bethany’s (diagnosis), so that’s why it was so significant to kick off BHF-Catch the Ace on that day.”
“It’s a win-win-win,” said McIntyre. “We can continue on with the research, we’re so close to a clinical trial.”
BHF-Catch the Ace is a progressive 50/50 draw where 30 per cent of the money goes to a progressive jackpot and 20 per cent goes to weekly winners.
The remaining 50 per cent will go towards the Bethanys Hope Foundation.