Dr. Heidi Tarr Henson, a Massachusetts woman recently diagnosed with ALS, reflects on on in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.

The ALS Association Florida Chapter recaps fiscal year 2020-21 by discussing accomplishments made that drive forward our vision and some fundraising/event downfalls due to COVID-19.

With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?

At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.