From May 29 – June 1, 2024, many ALS advocates and supporters 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 many individuals 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.
We are grateful to these ALS Network ambassadors and advocates who moderated and participated in speaker panels on the topics related to accessibility, raising ALS awareness and funds, and caregiving.
David Buseck, board member of the ALS Network and person living with ALS moderated a group discussion about accessibility. The panel included Alisa Brownlee, Home Accessibility and Assistive Technology Specialist, ALS United Mid-Atlantic who covered Accessibility Options for Entering/Exiting Your Home. Bernadine Okeke, a person living with ALS, I AM ALS advocate, spoke about traveling internationally while living with ALS. Heather Ansley, Esq., MSW, Paralyzed Veterans of America discussed what is next regarding the Federal Aviation Administration Reauthorization Act of 2024. Maceo Carter, a person living with ALS concluded the panel discussion covering Self-advocacy for Accessibility.
Asher Garfinkel, vice president of community outreach, led a discussion titled “Raising Awareness and Funds My Way.” The panel included people living with ALS, advocates, and caregivers who spoke about why it is important to raise both ALS awareness and funds by sharing their personal stories.
ALS Advocate and supporter of the ALS Network, Adrienne Kentor joined a discussion about caregiving, Removing Guilt, Finding Support, and Taking a Break. Led by Aditi Narayan Minkoff, MSSW, Vice President of Community Support at I AM ALS, the panel shared about their meaningful and difficult experiences caring for their loved ones.
The ALS Network thanks 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 cure ALS together.