In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.
Holiday celebrations and traditions are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families.
People living with ALS come first in everything we do. We’re dedicated to providing people fighting ALS and their families and friends with the critical information, support, and resources they need to live full lives and better meet daily challenges.
This weekend, people across the country will pause to reflect on and celebrate the economic and social value of American workers. And on Monday, many of them will enjoy a paid holiday off from work.
On February 12, 2018, the FDA announced its DRAFT Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment - Guidance for Industry. A copy of FDA’s draft guidance can be found here.
Picture, for a moment, that you’re in a straitjacket. You can’t move any limb to free yourself. All day and night long. That’s how I imagine my younger sister Nell has felt over the past seven years as she battles the biggest foe of her life: Amyotrophic Lateral Sclerosis, or ALS.
As many of you know, when my mother was diagnosed with ALS (Lou Gehrig’s disease) in 1985, we learned that the disease was familial, knowing that my grandfather died from it in 1956. A year later my aunt was also diagnosed with ALS. In order to deal with my frustration at the lack of progress in finding a cure, I became involved with the NY Chapter of The ALS Association. My hope was that I would be privy to advances in the field of research and help spread the word about the importance of raising funds to support that research. I eventually became a National Trustee of The ALS Association and continue to be one today.
We thank the FDA Advisory Committee for their clear and compelling recommendation that tofersen be approved under the accelerated approval pathway. We urge the FDA to swiftly approve this urgently needed new treatment. Americans living with this rare and aggressive genetic form of ALS cannot wait.
Celebrate Lou Gehrig Day with the Eau Claire Express and ALS Association Wisconsin Chapter.
Enter promo code ALS22 in the Promotions Box to purchase a $12 General Admission Ticket that includes a Hot Dog and Soda.