Remember when I asked you to sign an online petition in support of expanded access (aka compassionate use) to promising treatments for ALS? Well, in a bit of cruel irony, the writers of the original petition (dubbed ALS Treat Us Now) have sadly succumbed to the disease. However, their spirit lives on…
In 2012, with your help, the Lou Gehrig’s disease patient advocacy group, ALS Treat Us Now, earned a private hearing with the FDA’s director of Drug Evaluation and with the Division of Neurology Products. It was agreed that if a willing sponsor of an ALS treatment access program came to them, then the FDA would be very receptive and supportive of authorizing it.
To launch these programs, the advocacy group created an operating company called the ALS Emergency Treatment Fund (ALS-ETF). This non-profit company has worked hard to build an infrastructure of clinicians and researchers capable of bringing exploratory treatment to thousands of ALS patients.
Now, the ALS-ETF is hoping to raise the money needed to sponsor the first large scale, expanded access program in the history of ALS. Doing this will permanently change the treatment landscape for every current and future patient.
Share the video below and ‘Like’ ALS-ETF’s Facebook page in an effort to get the word out and to help restore hope for dying friends and family. On behalf of pALS near and far, I thank you for your support.