Treatment for Candisse

Who is Candisse?

She is a daughter, sister, cousin, friend, entrepreneur, and a woman who has big dreams and is full of ambition. She was also born with Spinal Muscular Atrophy Type 1.

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.

Upon diagnosis, Candisse’s parents were told that she wouldn’t live to see her 5th birthday. There was no cure and no treatment to help her.

On January 15th, 2023 Candisse turned 40!

She has defied the odds and has lived long enough that there is now a treatment out there for SMA. Risdiplam, aka Evrysdi is a prescription medicine used to treat spinal muscular atrophy (SMA) in children and adults.

Unfortunately, Alberta has not granted drug coverage for Risdiplam for anyone over the age of 25, leaving Candisse ineligible for treatment coverage. She is now faced with having to pay for the medication out of pocket at the staggering amount of $1000 PER DAY.

What are we asking for?

Candisse needs to raise funds to cover 1 year of treatment. The latest annual cost projection for treatment is approximately $350,000.

This treatment will drastically slow and possibly reverse the progression of Candisse's SMA. Studies have shown that there is a strong possibility she may regain some of the abilities she has lost.

Over the past 3 years, Candisse has shown a significant decline in her ability to do daily tasks such as eating, coughing, brushing her teeth, lifting a cup, doing her hair and makeup, and even driving her wheelchair. Many activities of daily living that Candisse could once complete with ease have either become a struggle or simply impossible.

Candisse has defied all odds in her SMA journey and deserves the best chance to continue living a full, happy, and long life. Risdiplam is that chance, and your donation gets her closer to taking the "miracle drug" that has given so many other SMA survivors their life back.

Time is of the essence, so please give if you can and spread the word by sharing this gofundme page.

Please reach out to your local MP and ask that Risdiplam become available to all people affected by SMA.