Turning Lived Experience into Empowered Advocacy

Welcome to ALS LEAP (Lived Experience Advocacy Program), a newly established 501(c)(3) nonprofit organization dedicated to improving access to ALS educational and advocacy conferences for individuals living with ALS and their caregivers, both present and former.

ALS-related conferences and symposiums play a critical role in empowering people living with ALS and families/caregivers (present and former) with knowledge, community, and a stronger voice in advocacy. Unfortunately, financial barriers often prevent those most impacted from participating. Our organization was created to close that gap by providing targeted financial support for conference registration, travel, and related expenses—so that more people can learn, connect, and ultimately become stronger advocates within the ALS community. Our ALS Advocates have helped to drive research and speak out for the needs of the ALS population (those living with ALS and their caregivers both).

For more information, contact LEAPforALS@outlook.com.

Past Events

We had an amazing night with our community at our inaugural event, Hope Never Goes Out of Style!

Our featured guest, renowned Neurologist and ALS Advocate from Duke University, Dr. Richard Bedlack showed his documentary “Stitching Strength” and took questions as part of a panel following the documentary.

Also joining us for the evening was Mr. Jerry Atwood, a local designer. Mr Atwood’s creations will be on display as part of a 6 month exhibit at the Museum. We had a chance to not only see Mr. Atwood’s collection, but also the suit he designed for Dr. Bedlack, which he has loaned to be included in the exhibit.

Thank you to all who came in style to support our inaugural event!