Help Us Stop ALS

Having ALS isn’t easy. It’s a devastating disease with no effective FDA approved treatment. The one thing that keeps me going is hope, hope that by working together we can accelerate access to promising treatments that might extend or improve the quality of life for people with ALS and other fast-moving fatal diseases. There are promising therapies in the FDA approval pipeline, but the FDA isn’t willing to grant accelerated approval of these drugs as Congress intended, even though the average life expectancy of an ALS patient is 3-5 years. The average time it takes for a drug to become FDA approved is over a decade. So I’ve joined with other ALS patients and their family members to start the only ALS patient group focused solely on accelerating approval of treatments, Hope NOW for ALS, particularly for the current generation of people with ALS. We have some big things planned and need your help to make them a reality. We hope to crowdfund $50,000 to continue our advocacy work: pushing the FDA to utilize the Accelerated Approval Program (created specifically for diseases like ALS) and embracing faster, smarter and more humane trial designs; connecting medical researchers with data analytics experts; and creating a truly global patient database for researchers to make speedy discoveries and approvals possible. Here’s how your contribution will help: Travel to Important Meetings Hope NOW for ALS needs to have a presence at important meetings that could change lives. This includes going to Washington, D.C. to meet with the FDA, attending ALS conferences, and meeting with researchers and CEOs of drug companies. Rally in Washington Last year we organized two advocacy demonstrations in Washington, D.C. and we expect there will be more - with your help. Funds raised here will go toward printing petition signatures, making signs and banners, and other event related costs. Build a Globally Shared Patient Database Right now, there is no universally shared patient database for ALS researchers that contains patient data of trials currently in progress or previously conducted, or patient data from the worldwide community of people with ALS. This is something all the research groups acknowledge is needed. After years of lip service, we must ensure this gets done! This data is critically important to shorten trial times and produce more meaningful results to hasten approvals. Every amount counts and we know that many people coming together can make a huge difference. Thank you for supporting our fight to end ALS.