Golfing for a cure

Times Reporter

 

The ninth annual charity golf tournament for Families of Spinal Muscular Atrophy, FSMA, Canada took place Aug. 20 at the Strathmore Golf Course. SMA is degenerative neuromuscular disease, which can result in muscular atrophy and weakness. 

There are three types of SMA in children and an adult version, type 4. 

Strathmore resident Craig Koch started the tournament to raise money for a cure after his daughter Cassidy was diagnosed at three-years-old. 

“Fifty per cent that are diagnosed as infants with SMA type 1 will die before they’re two years old because the disease basically fully paralyzes everything, including their breathing,” said Koch.

“Type 2 kids never walk and are usually in motorized wheelchairs, and I believe the mortality rate is 40 per cent or something along that line before they are teens. 

“Then type 3, which Cassidy has, is the most variable version of the disease. She can’t run, or climb stairs very good or jump or anything like that but, her diagnosis since she was three was that worst-case scenario, she could be in a wheelchair, best-case scenario she’ll have a relatively normal life.”

Cassidy is now 12 and still gets around on her own power, and though she does have some trouble with uneven ground and stairs, she is able to swim, and bike and partake is some of the things children her age love to do. There is still a chance, though, that some day things could become worse for her. 

One in every 40 people carry the gene that causes SMA, and the gene must be present in both parents in order for a child to be at risk of being born with the disease. It is the leading genetic killer of children under the age of two. To date there isn’t an approved therapy for the treatment of SMA, which affects one in every six thousand children. 

In May of this year the Food and Drug Administration, FDA, in the U.S. approved the clinical trial of a drug which will treat the disease, which Koch said brings hope to the families of SMA. 

Next year will mark the tenth annual golf tournament, and Koch said it would also be the last.  

“Ten years is a long time to run the event and it’s just time to move on to other things,” said Koch. 

“I’ll still be involved obviously with SMA, but it’s a big commitment for everybody…after 10 years I think a lot of tournaments kind of run their life cycle you might say, unless they’re really corporate run or something of that nature. When it’s a smaller, community run tournament like this one, or many others, it’s just time for me to say thank you to everybody and to move onto other things with SMA.”

To date the tournament has raised over $100,000 for SMA research.