News & Stories

Support Groundbreaking ALS Research

Donors play a crucial role in the development of new ALS medications, such as Tofersen. We need the support of our friends and family to continue these efforts.   By giving today, you can be a part of the next medical breakthrough!

This has been a groundbreaking year for ALS research and treatments. In the past 8 months, the FDA has approved two new ALS treatment drugs: AMX0035 (RELYVRIO) and most recently, Tofersen (Qalsody).

Tofersen is an innovative new ALS treatment for individuals with the SOD1 gene. Tofersen holds the distinction of being the first gene-based therapy for ALS to receive approval. Thanks to a dedicated community of supporters who are committed to creating a future without ALS, we have much to celebrate.  

Terry Smith, Tofersen Recipient

These advancements have a profound impact on people with ALS, like Terry Smith of Hood River, Oregon. Terry was diagnosed with ALS in November 2021, and learned shortly after that he has the SOD1 gene. Terry was overjoyed when he learned about Tofersen and its potential to slow the progression of his ALS. Mere hours after the news broke, Terry received a call from his nurse at the ALS clinic, arranging an appointment to initiate the paperwork necessary to begin his treatment with this remarkable therapy. Earlier this month, Terry became the first person in the country to receive Tofersen. Each step forward in ALS research provides hope to individuals with ALS and their families—the hope that we can discover medications to provide them with a fighting chance and the hope that, one day, ALS will no longer be a devastating diagnosis. By making a donation to ALS research, you take us closer to that future.  

The news of Tofersen instilled hope within Terry’s heart. Terry expressed, “From day one, I have been determined to raise awareness for ALS in any way I can. It has completely altered my perspective. I have come to realize the importance of seizing every moment. I consider us fortunate to be alive in this era. Sooner or later, a cure will be found.”  

Vashti Ross, Clinical Trial Participant

Clinical trials are a necessary step in the creation of new medical treatments, and many people with ALS partake in clinical trials to advance ALS research. One of these selfless participants is Vashti Ross of Beaverton, Oregon. Following her ALS diagnosis in 2014, she immediately volunteered to participate in clinical trials. Vashti has lost count of the number of spinal taps she has endured—no fewer than 26. For over a year, Vashti traveled to San Francisco once or twice a month for the spinal taps. Fortunately, the clinical trial eventually came to Portland, allowing her to continue her participation locally. When Tofersen received approval, Vashti experienced a profound sense of fulfillment. She remarked, “I felt like I was a part of something huge.”  

“Participating in the research was an honor,” Vashti added. “With ALS, one can often feel utterly helpless. The fact that I could contribute to the development of a new drug aimed at alleviating symptoms and moving us closer to a cure is nothing short of amazing.”  

Vashti’s message to all those who share the desire to find a cure for ALS is simple: “If you can, participate in clinical trials; if you can’t, help fund them.”  

Together, we can drive research forward and bring us closer to a world where ALS no longer steals lives and dreams. Your contribution today will fund critical research initiatives, provide hope to countless individuals and families affected by ALS, and propel us toward a future free from this devastating disease.   

Share This Page: