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my fight.
When I was born in 1983, there was no cure and no treatment for Spinal Muscular Atrophy. My family was told I wouldn’t make it to 5 years old…there was little hope.
As of 2024…there is HOPE
There’s NEW TREATMENTS for SMA. Three, to be exact.
Zolgensma® (onasemnogene abeparvovec-xioi), marketed by Novartis Gene Therapies, is FDA-approved for patients with all forms and types of SMA who are under two years of age at the time of dosing
Evrysdi® (risdiplam), marketed by Genentech, a member of the Roche Group, is an FDA-approved in pediatric and adult patients for all ages and types of SMA
Spinraza® (nusinersen), marketed by Biogen, is FDA-approved for all ages and types of SMA.
However, FDA approval doesn’t mean that all individuals receive access to any of these treatments.
At the beginning of 2024 I set out to raise funds to cover 6 months of treatment on the medication called Risdiplam (or, Evrydsi). A treatment that could 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
On Monday, May 13, 2024, everything changed. After months of waiting, uncertainty, phone calls, emails, meetings, sharing my story, researching, and navigating a rollercoaster of emotions, I finally received the email I had been fighting for.
Attached to that email was a letter from Alberta’s Health Minister, informing me that Alberta Health was approved to receive exceptional coverage for Evrysdi (Risdiplam) for a one-year trial period!
This milestone was a victory, but it also marked the start of a new journey. Part of this approval was based on the fact that as part of my plea to the government was the potential opportunity to get into 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
Six Months In:
Progress and Next Steps
Fast forward to December 28, 2024—a date that marked six months since I began treatment with Evrysdi.
These past months have been a mix of hope, adjustment, and reflection. I’ve noticed improvements in my strength and energy, with fewer days where simple tasks, like feeding myself or lifting a cup, feel overwhelming. While there are still ups and downs, I am cautiously optimistic about the progress so far.
What’s next?
I’m currently in talks with a clinic in the USA conducting the ASCEND Study. While there’s still a lot to work through, this is a hopeful step forward to improve my quality of life and contribute to vital research for the SMA community.
Make an impact today
Your donation fuels my fight for accessibility, inclusion, and change! Whether it’s advocating for a barrier-free world, inspiring others through storytelling, or helping businesses create accessible spaces, your support makes it all possible.
Plus, donations also help cover any out-of-pocket expenses if I’m accepted into a clinical trial in the USA—another huge step in my journey.
Every dollar counts toward breaking barriers and proving that YOU CAN make a difference.
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.
