Today, I have the pleasure of speaking with Amanda Stevens about ALS-amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Amanda is the wife of Eric Stevens, a former St. Louis Rams football player diagnosed with ALS on August 27, 2019. Amanda is also the Executive Director of the axeALS Foundation.
While several Food and Drug Administration-approved treatments for ALS exist, unfortunately, none of them have much impact on long-term survival and quality of life. Drugs in development are often out of the reach of most patients, even when these treatments seem promising.
To help patients with ALS find treatment as soon as possible, Amanda and Eric formed the axeALS Foundation to raise ALS awareness and support families with ALS.
Recently, the axeALS Foundation partnered with the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital to establish a new Expanded Access Protocol (EAP) program at the University of California, Irvine. Under the direction of Namita Goyal, MD, Professor of Neurology, UCI School of Medicine, and Director of UCI Health ALS Services, the multiyear program will expand access to investigational drugs for 30 people living with ALS who do not qualify for clinical trials.
The axeALS Foundation has also helped create legislation such as the “Act for ALS” to increase expanded access to ALS patients to drugs in development.
Please watch this 25-minute interview with Amanda Stevens about her family’s struggle with ALS, the work of the axeALS Foundation, and hopes for improved futures for people with ALS.
axeALS will host a fundraiser with Athlete’s First in Newport Beach, CA, on June 12, 2023. Please attend if you can!
To learn more about ALS or to donate, please check out the website: https://axeals.org/
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