ALS Roundtable Program Impact and Outcomes

We will do whatever it takes to make ALS livable for everyone—everywhere—until there is a cure. And the insights and recommendations that come out of ALS Roundtable meetings help guide our way, informing the development of new programs, initiatives, and activities that are:

treatments and technology

Accelerating New Treatments & Technologies

  • Trial Capacity Awards, a new grant program that provides up to $400,000 over four years to help eliminate barriers to trial participation and improve speed and efficiency at U.S. clinical trial sites.
  • Strengthened strategic engagement with the Food and Drug Administration (FDA), including a policy on when we support the approval of experimental therapies.
treatments and care

Optimizing Current Treatments and Care

  • thinkALS™, a tool for health care providers to help reduce the time it takes to diagnose the disease and refer people to multidisciplinary ALS clinics.

  • Genetic counseling and testing resources to educate and raise awareness among people with ALS and their families.
  • Evidence-based consensus guidelines for ALS genetic counseling and testing aimed to improve and standardize practice among providers caring for people with ALS.
  • Quality of Care Research Awards, a new research funding opportunity that supports efforts to make ALS care safer, more accessible, more equitable, and more affordable through two-year grants worth up to $500,000.
Reducing Harms

Reducing the Harms of ALS

  • My ALS Journey, a personalized, web-based tool that allows people living with ALS to take control of their journey with the disease by connecting them with the resources, advice, and support they need.
  • Partnership with the Patient Advocate Foundation to help with insurance denials and financial support, including grants for copays, deductibles, premiums, and living expenses.
  • ALS Coverage Resource Guide, which contains evidence to help advocates educate health insurance plan designers and administrators about the importance of covering necessary treatments, services, and equipment.
  • ALS Focus™ survey completed by 440 participants that explored the insurance needs and financial burdens​ of people living with ALS.
  • Implementation of new ways to track complications for people with ALS receiving care at ALS Association-certified clinics to help guide intervention development
Participating in the Roundtable Program makes me feel like I’m making a real contribution to the ALS community because I’ve seen so many ideas we’ve discussed make an impact on the daily experience of people living with ALS.”
ALS Roundtable Participant
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