A recap from I AM ALS’ 2024 ALS Awareness Events, which took place in Washington, DC from May 29th – June 1st.
In 2024, I AM ALS hosted our first ALS Community Summit and the 3rd annual ALS Awareness Month flag event, which drew over 1,100 people.
ALS Flag Installation
Over 100 volunteers helped install, take down, and photograph the 6,000 flags that were placed on the National Mall in front of the Washington Monument and next to the National Museum of African American History and Culture (NMAAHC). The NMAAHC’s lead architect and architect of record is Phil Freelon, who passed from ALS.
ALS Flag Installation
ALS Flag Ceremony
Each year I AM ALS holds a ceremony on the National Mall at the ALS Flag Installation, where community members can share their ALS stories. This event is powerful, as it provides some people their first entrance into advocacy and others with a chance to inspire others.
Please take a moment to watch the incredible speeches made by ALS advocates such as Spero Koulouras, Deb Winters, Lorri Carey, Lakeia Nard, Dr. Stacy Lewin Farber, seven-time Grammy nominee Nneena Freelon, and so many more.
You can watch the entire ceremony on our YouTube channel below. Follow the link to YouTube to find timestamps and speakers’ full names.
I AM ALS Community Awards
This year we introduced the I AM ALS Community Awards to recognize advocates for their incredible work. We received over 100 nominations, and winners were chosen by a selection committee made up of community members and I AM ALS staff.
- The Scott Davis Amplify Awareness award went to Tim Abeska and Tim Lowrey.
- The Sandra Marlowe Spirit Award went to Matt Wild.
- The Becky Mourey Outstanding Co-Lead Award went to Diane Hoey.
- The Sandy Morris Outstanding Advocate Award went to Nicole Cimbura.
- Learn more about the awards and their incredible recipients here.
ALS Community Summit
The ALS Community Summit was a three-day event created by ALS advocates, I AM ALS, and 16 other ALS organizations. At the summit, 400 ALS advocates from across the country met, discussed, and learned from each other about the important issues facing the ALS community and developed tactics to address these issues. Below are recordings of the summit’s panels as well as supplementary material provided by the speakers.
Raising Awareness and Funds My Way
Moderator: Asher Garfinkel, VP, Community Outreach, ALS Network
Presenters:
When there are no deep pockets
- Deb Winters, Person living with ALS until a cure is found and Founder of Debba’s Hope 4 Tomorrow
Keep Being You: An Approach to Raising ALS Awareness
- Tavares Speer, Person living with ALS
On Your Mark
- Maycee Wilkie, Former Caregiver, Founder of On Your Mark
- Lorri Carey, Founder and Host of I’m Dying to Tell You and I AM ALS Advocate
ALS Clinic Advisor: Getting The Most From Your Clinic Experience
- Diane Hoey, I AM ALS, The Mappers, ALS Problem Solvers
Removing Guilt, Finding Support, and Taking a Break
Moderator: Aditi Narayan Minkoff, VP of Community Support, I AM ALS
Presenters:
Lessons Learned from a Former ALS Caregiver
- Cristy Hardin, Ed.D., Former Caregiver, I AM ALS Volunteer
- Written by Cristy:
Helpful Hints for Caregivers
- Mary Rebar, Care Services Coordinator, ALS Northwest
- Debbie Lower, I AM ALS volunteer
Loving Eric and Finding Happiness in Rough Times
- Adrienne Kentor, Former Caregiver & ALS Network Advocate
Finding Meaning and Support as Caregiver
Working Within the System: Advocacy on the Inside
Moderator: Tiffany Card, ALS United Greater New York
Presenters:
South Carolina Funding for ALS Grants
- Ronald Faretra, Person Living with ALS, ALS Association and I AM ALS advocate
Telling it Like It Is: FTD Advocacy
- Sharon Hall, Caregiver, FTD Advocate
Effective Hill Engagement and Strategy
- David Steury, Health Policy Director for Representative Diana DeGuette
- with Caitlin Peruccio, Health Policy Director for Representative Rosa DeLauro
The Impact and Evolution of Patient Centered Clinical Trial Design (PaCTD) Ratings
- Rob Faulstich, I AM ALS volunteer
Home Care
Moderator: Debbie Schlossberg, ALS United Greater New York
Presenters:
Why We Must Pass and Implement the Elizabeth Dole Home Care Act
- Lara Garey, Alumni Elizabeth Dole Foundation Fellow and I AM ALS advocate
Passing State Legislation for Caregivers
- Linda Gregoire, Caregiver and Co-Founder, Hope-JG Fights ALS
- Patrick Corey, Maine state representative
- Laura Ness, Deputy Executive Director, Heart for Home Care
Efforts to Increase Access to Medicare-Covered Home Health Care Services
David Lipschutz, Associate Director/Attorney, Center for Medicare Advocacy
Accessibility
Moderator: David Buseck, ALS Network Board Member, person living with ALS, author of Paris: City of Cultures: Walk & Roll with Fresh Eyes
Presenters:
Accessibility Options for Entering/Exiting Your Home
- Alisa Brownlee, Assistive Technology, ALS United Mid-Atlantic
Don’t Be Afraid: International Travel and ALS
- Bernie Okeke, Person living with ALS, I AM ALS advocate
The Federal Aviation Administration Reauthorization Act of 2024: What’s Next?
- Heather Ansley, Esq., MSW, Paralyzed Veterans of America
Self-advocacy for accessibility
- Maceo Carter, Person living with ALS
- Featuring Maceo:
- People with severe disabilities (and our wheelchairs) fly at our own peril. It shouldn’t be
- ‘Food out of my children’s mouth’: How airline wheelchair damage can go beyond travel
- Better Air Travel Accountability and Access for the ALS Community
- Muscular Dystrophy Association Announces TSA Partnership to Provide Employee Training Resources
Youth and ALS
Moderator: Paul Carey, ALS advocate and co-founder of Kids 4 Cure
Presenters:
Youth Caregiving Crisis
- Sarah Trott, Hope Loves Company Board Member, former youth caregiver
- Sarah’s website
- Lakeia Nard, lost son to ALS
Stomping Out ALS One Step at a Time
- Emma Terry, former caregiver and Founder of Stomping Out ALS One Step at a Time
Raising Children Alongside ALS
- Gretchen Duffy, former caregiver
How to Talk to Teenagers About Familial ALS
- Mindy Uhrlaub, lost a family member to ALS and gene carrier
Capitol Hill Days
I AM ALS, our collaborative partners, and 65 community members met with 41 members of Congress to advocate for more ALS research funding, Elizabeth Dole Home Care Act, Promising Pathway, and more.
It was an incredible and inspiring day. Seasoned advocates helped new advocates build relationships with their legislators, and Congress learned that they must move faster to end ALS and better serve people living with and impacted by ALS.
ALS Flag Installation
Cures Collective Kickoff Meeting
This amazing week also hosted the first meeting of the Cures Collective! The Cures Collective is an ALS and neurodegenerative disease coalition working to identify gaps, reduce duplication, increase effectiveness, and unlock critical breakthroughs by uniting advocates and organizations that are committed to ending neurodegenerative diseases (NDs). The vision of the Cures Collective is to increase awareness, and accelerate treatments and cures for all neurodegenerative diseases through collective action.
Learn more about the Cures Collective here.
CRAB 2024
Chesapeake Region Adaptive Boating (CRAB) partnered with I AM ALS to take 13 people living with and impacted by ALS on accessible sailboats.
We cannot thank them enough for their generosity.
ALS Flag Installation
Huge thank you to our Summit sponsors:
