Since 2019, The ALS Association Roundtable Program has provided a forum for candid, facilitated discussions that guide our strategy for ALS care, advocacy and research. Held in the spring and fall each year, these unique meetings bring together individuals from every corner of the ALS community, including people living with ALS, caregivers, clinicians, academic investigators, industry representatives and government agency officials, to reflect diverse points of view on ALS-related challenges.
During each meeting, attendees focus on one major challenge faced by people living with ALS and their caregivers and then recommend potential solutions. We then work with a broad array of stakeholders and subject matter experts to refine and implement these recommendations.
Here are just a few examples of how Roundtable discussions have been turned into positive action for people living with ALS and their families.
ALS Focus is our patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the entire ALS community can benefit.
Based on discussions that began at Roundtable meetings, we have leveraged ALS Focus to collect important insight and data to help strengthen care, accelerate therapy development, improve clinical trials, influence insurance coverage decisions and more.
After hearing from Roundtable participants that reducing time to diagnosis was critical for improving ALS care and outcomes, as well as helping people avoid unnecessary testing and medical procedures, we worked with a group of experts to create thinkALS. This easy-to-use and powerful guide helps health care professionals better understand ALS, recognize its symptoms and refer people to multidisciplinary ALS centers faster.
While not a diagnostic tool, thinkALS provides non-ALS specialists a comprehensive list of key clinical features of the disease that may lead them to suspect an ALS diagnosis much earlier than they would otherwise. It also provides information on how to find the nearest ALS multidisciplinary clinics based on zip code, along with guidance on how physicians can write referrals to speed up access to ALS treatments.
My ALS Journey™
Following discussions on ways to improve access to essential care, services and support for people living with ALS and their caregivers, we launched a new web-based platform called My ALS Journey. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey. This interactive tool provides a personalized experience, relevant information, articles and actionable checklists to help people living with ALS plan as they experience the progression of the disease. With a personalized profile, individuals can learn about the appropriate – and time-sensitive – interventions available to truly live longer and better with ALS.
Genetic Testing Information and Education
Genetic testing was identified as another key component of reducing the time it takes to diagnose someone with ALS, giving them more time to access treatments and enroll in clinical trials. Recognizing the importance of ensuring the ALS community has the information they need to make informed decisions, we launched a genetic testing/counseling awareness and education campaign. This communications campaign included everything from revamped website content and educational blogs and stories from the community to a series of emails, podcasts, videos and social media posts.
Even with all that has been achieved over the last 5 years, people with ALS and their caregivers still face significant challenges, and much more needs to be done. With the help of all those who contribute their time, insight and support to the Roundtable Program, we will make ALS a livable disease for everyone, everywhere, until we find a cure.
More information about the ALS Roundtable Program, including summaries from each meeting, can be found HERE.