Vashti Ross passed away on Tuesday, July 11th.
She was incredible champion for our mission and will be missed.
Vashti Ross was diagnosed with ALS in 2014. Knowing that research is the path towards a cure for ALS, she immediately volunteered to participate in clinical trials. Soon after, a genetic test confirmed that she has the SOD-1 gene mutation, the second most common cause of familial ALS.
This made her a perfect candidate for the Tofersen clinical trials, which targets the SOD-1 gene mutation.
The medication is administered via spinal tap, and Vashti has now lost count of how many spinal taps she has endured- it’s no less than 26. For over a year, Vashti traveled to San Francisco once or twice a month for the spinal taps. Fortunately, the clinical trial came to Portland so she could continue to participate locally. When Tofersen was approved by the FDA, Vashti felt gratified, “I felt like I was a part of something huge.”
When asked what it means to her to have a new ALS medication available, Vashti says, “It’s amazing. It was such a privilege to participate in the research. With ALS, you can feel so helpless. The fact that I could actively contribute to the development of a new drug to alleviate symptoms and move us towards a cure is amazing.”
Although Vashti helped make Tofersen a reality through her significant sacrifice, she is too weak now to sit up for a spinal tap and will not be receiving the medication.
She has a simple message for everyone who wants to find a cure for ALS: “participate in trials if you can, and fund them if you can’t.”
Join Vashti in her unwavering commitment to finding a cure for ALS by making a donation to ALS research today.
Read Vashti’s blog post “The ALS Association: A Love Letter” here.