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2024 I AM ALS Community Summit

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This page has everything you need to know about the I AM ALS 2024 Community Summit and related ALS Awareness Month events in Washington, DC from May 29th – June 1st.

Welcome to I AM ALS’s inaugural Community Summit and third annual DC ALS Awareness Event! 

In 2024, I AM ALS will host our first ALS Community Summit. This summit will be a three-day event where ALS advocates and community organizations can meet, discuss, and learn from each other about the important issues facing the ALS community and develop tactics to address these issues. You are not going to want to miss this opportunity.

We will also host the 3rd annual ALS Awareness Month flag event. In 2022 and 2023, I AM ALS hosted the community and displayed 6,000 flags on the National Mall, honoring those living with ALS, those we have lost to ALS, and those who are ALS gene carriers. We hosted a speaking event at the flag installation where community members could tell their story and raise awareness of ALS and the actions that need to be taken. In 2023, we added coordinated meetings between advocates and legislators to ensure Congress heard the ALS community policy priorities, concerns and solutions directly from the ALS community. All of this amazing work will continue in addition to this year’s summit.  

These incredible events will: 

  • Bring the community together for networking, connection, and support
  • Engage with Congress to educate them on ALS and public policy priorities for the community
  • Raise public awareness of ALS
  • Offer trainings and opportunities for community members to learn from each other, influence legislative and other change in ALS, story tell, and more 

Like all I AM ALS initiatives, we could not do this without you.

Where:

The ALS Community Summit will take place primarily at Hogan Lovells US LLP DC:

Columbia Square
555 13th Street NW
Washington, D.C. 20004

The flag installation will be placed on the National Mall in Washington, DC, between the Washington Monument and 14th St SW. Use this address for reference: 

2 15th St NW
Washington, DC 20024

I AM ALS has secured a block of rooms in the JW Marriott, 15 of which are wheelchair accessible. Book from this block here.

Schedule:

(All times are Eastern Time)

Wednesday, May 29

10 am- 3 pm: Set up flag display on National Mall

10:30am- 11:30 am – Legislative Advocacy Training (for those going to Congress) at Hogan Lovells

1-4:00 pm-  Meetings with Congressional Offices at the Capitol

4:30-7pm – Reception at Hogan Lovells AT CAPACITY- MUST BE REGISTERED FOR THE SUMMIT TO ATTEND

Thursday, May 30

10am-1pm- Community Speeches at the Flag Display

1:30pm- 5pm- Meetings with Congressional Offices at the Capitol (for those going to Congress)

2:30pm-5pm ALS Summit Panels: AT CAPACITY- MUST BE REGISTERED FOR THE SUMMIT TO ATTEND

2:30-3:45 – ALS Summit –Raising Awareness and Funds My Way

    • Moderator: Asher Garfinkel, VP, Community Outreach, ALS Network
    • When there are no deep pockets
      • Deb Winters, Person living with ALS until a Cure is Found
    • 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
    • ALS Clinic Advisor: Getting The Most From Your Clinic Experience
      • Diane Hoey, I AM ALS, The Mappers, ALS Problem Solvers

4:00 – 5:15 ET – ALS Summit- Removing Guilt, Finding Support, and Taking a Break

  • Moderator: Aditi Narayan Minkoff, VP of Community Support, I AM ALS
  • Lessons Learned from a Former ALS Caregiver 
    • Cristy Hardin, Ed.D., Former Caregiver, I AM ALS Volunteer
  • Helpful Hints for Caregivers 
    • Mary Rebar, Care Services Coordinator, ALS Northwest
  • Peer Support Initiative
    • 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
    • Dr. Allison Applebaum

Friday, May 31

9am- 5pm- Meetings with Congressional Offices at the Capitol

10am- 5pm – ALS Summit at Hogan Lovells

10 am- 11:15 – ALS Summit – Working within the system: Advocacy on the inside

    • Moderator: Tiffany Card, ALS United Greater New York
    • 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

11:30 – 12:45 – ALS Summit –Home Care

  • Moderator: Debbie Schlossberg, ALS United Greater New York
  • 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 
  • Heart for Home Care
    • Laura Ness, Deputy Executive Director, Heart for Home Care
  • Efforts to Increase Access to Medicare-Covered Home Health Care Services
    • Kathy Holt, Associate Director/Attorney, Center for Medicare Advocacy

2:15-3:30 ALS Summit Session – Accessibility 

    • Moderator:  David Buseck, ALS Network Board Member and person living with ALS
    • 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

3:45- 5:15 ALS Summit Session – Youth and ALS

    • Youth Caregiving Crisis
      • Sarah Trott, Hope Loves Company, former youth caregiver
    • Melanin Children Matter
      • 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

 

Saturday, June 1

9am- 3pm – Flag display

10am- Chesapeake Region Adaptive Boating (CRAB) – https://www.iamals.org/action/crab2024/

3pm-5pm – Flag display breakdown

All the Links You Need

*Please Note: In-person summit registration has temporarily closed. You may still sign up to attend virtually or to volunteer at the flag event.*

  • Flag Submission Form – Use this form to submit a name to be printed onto a flag as part of the display. If you have had a flag in previous years, you WILL need to resubmit in order to be included again in 2024. 
  • Event and Summit RSVP Form – Use this form to indicate whether you will be in DC in person for any part of the event. (You can also use this form to volunteer to help I AM ALS with flag setup, breakdown, taking photos, etc.) 

Logistics

We know traveling can be difficult, so here are some logistical tips that might help.

Recommended Hotel

  • JW Marriott
    • 1331 Pennsylvania Avenue NW, Washington, DC 20004
    • I AM ALS has secured a block of rooms in this hotel, 15 of which are wheelchair accessible. Book from this block here.

Metro Stops Closest to Locations

We’re so excited to get this event going! Don’t see what you’re looking for? Let us know by contacting us!

Huge thank you to our Summit supporters:

  

 

Thank you to our community partners for collaboration and promotion of this event:

 

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