The Power of ALS Research: Terry Smith

A new treatment in 2023 changed the medical landscape for Terry Smith, a person living with ALS in Hood River, Oregon. This article is from the 2023 Annual Report.

Terry Smith was diagnosed with ALS on November 4, 2021 – just three days before his 50^th birthday. Soon after diagnosis, he learned he has the SOD1 gene mutation, a rare genetic variant of the disease. 

Thankfully, ALS research saw incredible innovations last year. The FDA approved Tofersen in April 2023. This antisense therapy effectively “silences” the particular mutation and aims to slow the progression of the disease. 

Mere hours after the news of this medicine broke, Terry received a call from a nurse at the Providence ALS Center in Portland, arranging an appointment to initiate the paperwork necessary to begin treatment with this new therapy.

With Tofersen, clinicians can check a person’s biomarkers throughout treatment to see if it’s effective. This analysis is unique and an extremely encouraging advancement because it’s difficult to measure the effectiveness of medications currently on the market. Terry’s neurologist noted improved strength in his lower legs, an exceptional occurrence for a progressive disease like ALS. 

ALS Northwest continues to work with Terry at every ALS clinic appointment. Our organization also supports him through offerings like the Helping Hands volunteer program. Terry requested volunteer assistance for household tasks that have become more strenuous, and was recently matched with someone who helps around the house twice a month. Terry is also a regular attendee at the Hood River ALS Support Group. 

Each step forward in ALS research provides hope to individuals with ALS and their families. Terry shared, “They say you have two to five years to live, and you have to prove them wrong. 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.”