ALS is a neurodegenerative disease that progressively destroys a person's motor neurons leading to paralysis of all voluntary muscles leading to profound disability including walking, talking, swallowing, and eventually breathing.
Today, ALS is 100% fatal with no truly effective approved therapies or cures. Post diagnosis life expectancy is only 2-5 years; however, some patients live much longer. Lifetime risk of being diagnosed with ALS is 1:300. #NotThatRare.
Many promising therapies are in the clinical trial pipeline. However, clinical trials typically take 4-5 years to produce an approved therapy (longer than typical survival for current ALS patients), and over half of current ALS patients are excluded from accessing these therapies by participating in clinical trials.
Bottom line: Far too many of today's ALS patients are #DyingWaiting for new and effective therapies.
There is a solution. Expanded Access Protocols (EAPs) are an FDA-sanctioned way to make new therapies available to current ALS patients excluded from trials. EAP programs, typically run at clinical trial sites, provide clinical-trial-ineligible patients with new therapies while monitoring their health and safety. This buys ALS patients time and all-important hope while these many promising new ALS therapies wind their way through the clinical trial pipeline. #DrugsInBodies
The current number of EAP slots in the US only addresses about 2% of eligible ALS patients. While pharma companies will typically provide emerging therapies free of charge to EAP programs, additional funds are needed to widely establish expanded access programs in the US and close this crucial gap in patient care.
Joining a long tradition of ALS patient-advocates, Shawn Sarbacker has teamed up with the world-leading Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital to fundraise towards establishing widespread ALS Expanded Access Protocol Programs - 100% of TechVsALS funds raised go directly to the Healey & AMG Center for ALS. These resources allow us to launch additional EAP sites at existing HEALEY ALS Platform Trial sites nationwide, expanding access to experimental therapies to people with ALS.
Focusing on the innovative and forward-looking "Tech" community, our "TechVsALS" fundraising team is reaching out to companies, foundations, organizations, and individuals who might join us in sponsoring Expanded Access Protocol (EAP) programs nationwide to extend, and perhaps, save the lives of those suffering from this terrible disease.
We hope other industries, organizations, or companies will join the battle with their own "VsALS" teams!
