I need to raise funds to cover 6 months of treatment on a medication called Risdiplam (or, Evrydsi). This treatment can drastically improve my quality of life as well as slow (and possibly reverse) the progression of SMA. Coverage of this drug is assessed on a per-patient basis in Alberta. Because I’ve defied the odds, I’m one of few with SMA Type 2 in their 40’s and deemed not eligible for government funding for this life-changing treatment. The 6 month out-of-pocket cost to access Evrydsi is:

$ 175,000

Yep. You saw that right. But, here’s the INCREDIBLE NEWS - A clinical trial called ASCEND is studying a treatment for adults with SMA - the FIRST EVER study on an ADULT dosage. I meet ALL the criteria, except… I must be on Evrydsi for a minimum of 6 months. If I can do that, my travel costs to the US are covered and I will receive FREE TREATMENT for 2.5 years. Not to mention, I’ll be providing valuable research for the SMA community.

What is SMA?

Spinal Muscular Atrophy (SMA) is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). SMA typically strips people of the ability to crawl, walk, sit up, breathe, chew and many other daily tasks that most of us take for granted.

How you can help…