The inaugural I AM ALS Community Summit in Washington DC

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From May 29 – June 1, 2024, representatives from the ALS Network and other ALS nonprofit organizations participated in the inaugural ALS Community Summit hosted by I AM ALS. Held in Washington DC, the three-day gathering featured ALS advocates and community organizations who met to discuss important issues facing people with ALS and their loved ones and to share knowledge and develop collaborative strategies to benefit our ALS community. 

ALS advocates attended several legislative meetings with Capitol Hill staffers to raise awareness and urge the congressional offices about the need for improved access to care and federal funding for ALS research. 

The second day began with a speaker series at the third annual ALS Awareness Month National Mall flag display, with thousands of flags on the National Mall honoring people with ALS. 

This moving and inspirational ceremony was followed by a hybrid in-person/virtual summit of two panels. The first one, “Raising Awareness and Funds My Way,” was moderated by Asher Garfinkel, ALS Network Vice President, Community Outreach, and featured speakers Deb Winters, Tavares Speer, Maycee Wilkie, and Diane Hoey. 

The next panel, “Removing Guilt, Finding Support, and Taking a Break,” was joined by Adrienne Kentor, ALS Network advocate and surviving spouse, who discussed finding happiness throughout the ALS journey. 

The final day of the summit featured four additional panels, including one covering the topic of accessibility, that was moderated by David Buseck, ALS Network board member, author of Paris: City of Cultures, and person with ALS. 

The ALS Network would like to extend our deepest thanks to everyone who took part virtually and in-person at the ALS Community Summit. We are grateful to people with ALS, caregivers, and many ALS advocates for their collaboration and dedicated efforts as we work towards finding treatments and cures for ALS.  

Special thanks to ALS Network advocates David Buseck, Linda Levine, and Adrienne Kentor for making the trip across the country to represent the thousands of families whom we serve in California and Hawaii. 
See more photos on our Flickr channel!

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