Select Page

Join us May 7-10 for the 2025 Community Summit in Washington, D.C.

Calling all advocates! Join I AM ALS in Washington, DC (and virtually) for the 2025 ALS Community Summit. This event brings together ALS community advocates to learn from each other, connect, heal, and mobilize. We hope you will join us for this incredibly powerful and inspiring event. Participants are welcome to attend virtually, too!

Register as a participant or volunteer!
Become a Summit Sponsor!

The week’s major activities and events include:

ALS Hill Days: Wednesday 5/7 -Thursday 5/8

I AM ALS, our collaborative partners, and community members will come together for an initial training session followed by meetings on Capitol Hill to push for members to join the ALS Caucus and support the ALS community’s funding and policy priorities.

Welcome Reception & Award Ceremony: Wednesday, 5/7

I AM ALS will host an evening welcome reception to celebrate the ALS community and honor ALS champions. Check-in for the welcome reception starts at 4:45pm. Welcome reception program starts at 5:30pm. Space is limited to 100 attendees, including caregivers.

Flag Installation & Opening Ceremony: Thursday, 5/8

I AM ALS and the ALS community will install 6,000 blue flags honoring those living with ALS, those we have lost to ALS, and those who are ALS gene carriers. After installation, community members join in an opening ceremony to share their ALS stories.

This powerful event allows some people to share bravely, while others listen and learn as their entrance to advocacy.

To submit a name for the 2025 flag installation, click here.

Community-led Panels & Workshops: Friday, 5/9

The summit will feature topic-based panels for ALS advocates from across the country to present and learn from each other about the important issues facing the ALS community and develop tactics to address these issues. Space at the panels is limited to 100 attendees, including caregivers. Information on workshops is TBD.

 

View the Full Schedule
If you want to attend the Summit but it would be a considerable financial burden, apply for a 2025 Summit Scholarship here.

If you’d like to make a donation to the Summit Scholarship fund, click here!

If you’d like to nominate someone for this year’s ALS Community Awards, click here.

 

Click here to register for any of these events and/or volunteer opportunities to help set up for the ALS Hill Days and the Flag Display. Please note that there is a $20 registration fee for all attendees to register for the opening reception and/or panels. ALL ATTENDEES, INCLUDING CAREGIVERS, MUST BE REGISTERED.

Space is limited this year, and the venue has asked us to adhere to strict protocols around attendee registration for the sake of security (which is typical for DC events). Your registration fee reserves your space. If you register for in-person attendance but are later unable to join us, please email community@iamals.org to release your spot for another community member. We will refund you if the cancellation is more than 48 hours before the event.

Hotel Block Information

If you’d like to book a hotel room for your stay, I AM ALS has reserved a block of rooms at a discounted rate at the Grand Hyatt Washington. 

You are not required to stay at this hotel. If you’d like to make other hotel reservations or accommodation arrangements elsewhere in Washington, D.C., please feel free to do so.

The nightly cost for this optional hotel room is $369 plus 15.95 % tax. If you choose to book at this hotel and would like the discounted rate, you must book your reservations by April 15, 2025. To book your room, use this booking link. You may book a room at this hotel using the discount code G-ALS3.

Please be sure to select that you need an accessible room when you’re booking if you need accessible accommodations.

Note: The Hyatt parking garage has a height limit of 7 feet. If your vehicle is over 7 feet, you will not have access to the Hyatt parking garage.

Please contact us if you have any questions by emailing community@iamals.org.

Huge thank you to our Summit sponsors and community collaborators:

 

 

 

ALS Community Summit 2025 partners, sponsors, and collaborators
Become a Summit Sponsor!

Frequently Asked Questions

Have questions about the 2025 ALS Summit? Here are some FAQs and answers! If you have other questions, please email community@iamals.org.

Do I have to use the hotel block?

No, but it will likely be the cheapest hotel option close to the location at this time of year.

If you’d like to book a hotel room for your stay, I AM ALS has reserved a block of rooms at a discounted rate at the Grand Hyatt Washington. 

You are not required to stay at this hotel. If you’d like to make other hotel reservations or accommodation arrangements elsewhere in Washington, D.C., please feel free to do so.

The nightly cost for this optional hotel room is $369 plus 15.95 % tax. If you choose to book at this hotel and would like the discounted rate, you must book your reservations by April 15, 2025. To book your room, use this booking link. You may book a room at this hotel using the discount code G-ALS3.

Please be sure to select that you need an accessible room when you’re booking if you need accessible accommodations.

Why is there a registration fee for the welcome reception, workshops, and panels this year?

With a hard limit on indoor capacity for these activities, we are charging a fee to reserve your spot at these events. Fees collected will be put toward scholarships for community members with financial limitations to attend the summit.
Do I have to pay the registration fee to attend the flag event/speaker series or participate in Hill Days?

Nope! The registration fee only applies to activities taking place inside Hogan Lovells.
Why do I have to register my caregiver(s)? What if I don’t know yet who my caregiver will be that day?

Security at Hogan Lovells requires the names of everyone who will be entering the building at least 24 hours in advance. (This is typical for places like this in Washington DC.) If you don’t know who will be with you at the time of registration, you can register without their names. We will reach out to you in the days before the event to confirm who will be with you.
Are these locations wheelchair/power chair accessible?
Yes! The flag event will be outdoors, and Hogan Lovells and the US Capitol are wheelchair accessible.
Register for the Summit!