National Advocacy

From Lou Gehrig to the Ice Bucket Challenge, many people have heard of ALS. But members of Congress need to know about ALS and its true impact on people living with ALS and their loved ones. This is where you come in. Advocates people living with ALS, their families, friends, doctors and researchers successfully sharing their stories with members of Congress will result in more legislative victories.

The ALS Association invites you to join the entire ALS community as we unite in Washington, DC for the National ALS Advocacy Conference. This is our opportunity to share the ALS story and let Members of Congress know the true nature of the disease and why more must be done now.

This year’s conference will be held Sunday, May 14 – Tuesday, May 16, 2017. After a day and a half of meetings and training sessions, ALS Advocates from across the country will take to Capitol Hill for meetings with their legislators on Tuesday.


Conference Overview

Please click here for the full Schedule-at-a-Glance.

Sunday, May 14
The conference will open with welcoming remarks and updates on ALS policy priorities. There will be a Patient and Caregiver Reception before Dinner and Entertainment.

Monday, May 15
Trainings, meetings and sessions continue as ALS Advocates prepare for their trip to Capitol Hill.

Tuesday, May 16
Opening the day with the Celebration of Excellence Breakfast, transportation to Capitol Hill will begin at 8:30 am. The last bus will leave Capitol Hill at 5:30 pm and the conference will conclude with a hospitality room where you can discuss your day with fellow advocates.



Registration for the conference is close to selling out and will end on Friday, April 21 if it does not sell out before then.

Click here to register for the 2017 National ALS Advocacy Conference. If you do not have internet access, you may register by calling the Public Policy Department at 1-877-444-ALSA.

Conference registration fees are waived for people with ALS and for one caregiver traveling with them to the conference.

For other participants, the 2017 conference has a $175 non-refundable registration fee for attendees who are affiliated with The ALS Association, an ALS Association Chapter or other affiliated organization. This fee covers a small portion of conference costs, including meals, transportation to Capitol Hill and briefing materials. Registration fees for children age 3 16 are $25. The fee for non-affiliate attendees is $350.

In order to receive reduced registration rates, please register no later than Friday, April 21, 2017. After April 21, registration fees are: $350 for affiliates, $700 for non-affiliates, and $50 for children age 3 16.


Hotel Information

J.W. Marriott Hotel
1331 Pennsylvania Avenue, NW, Washington DC 20004
Phone: 202-393-2000
(Headquarters Hotel Registration and Sessions)

Due to the overwhelming interest in participating at this year’s National ALS Advocacy Conference, our room block has sold out. We are working with the hotel to add more rooms to the room block. If you have a reservation at the J.W. Marriott that needs to be adjusted, or run into problems making your hotel reservation, please contact Sarah Weissmann at We will continue to update this page with any new information.


ADA Rooms

ADA rooms at the J.W. Marriott have been secured by the ALS Association. In order to request an ADA accessible hotel room, you must contact Michael Coscia at After registering for the conference and booking your hotel room, please e-mail Michael with your name, hotel confirmation number and ADA requirements. He will update your reservation with the hotel accordingly. Overflow ADA rooms have also been secured at a nearby hotel and shuttle transportation will be provided.

For questions about hotel reservations or transportation, please contact Michael Coscia at


Participate in ALS Research

The ALS Association is pleased to once again offer conference attendees an opportunity to participate in an exciting research project conducted by the National Institutes of Health (NIH). On Monday, May 15, people with ALS may provide blood samples and complete a questionnaire as part of their study.

The purpose of the study is to learn more about the causes of the disease not to test a potential treatment. If you would like to participate by giving a blood sample and meeting with staff to complete a questionnaire, please contact the Care Services Department at or 1-800-782-4747.

People living with ALS will also have an opportunity to sign up for the ALS Registry at the CDC, if they have not already done so. There will also be more information about the new National ALS Biorepository at the Registry. We will not be taking samples for the biorepository at the Conference but can provide you information on how to sign up.


Travel Information

Washington, D.C. is served by three international airports: Reagan National Airport, Dulles International Airport, and Baltimore/Washington International Thurgood Marshall Airport.

Washington is also served by Amtrak and regional trains at Union Station.

Enter Coupon code ZY6Y470392 on or Meeting Code NMPWU on to save on airfare.


Meetings with Your Legislators

A highlight of the Advocacy Conference is spending Tuesday on Capitol Hill meeting with members of Congress. Chapter staff will be in touch to help schedule your meetings. More information will be available in this space to help you research and prepare for your meeting.


Around Washington

Activities outside of the hotel can easily be reached by using the Washington Metro system. The nearest Metro station to the J.W. Marriott Hotel is Metro Center (Blue/Silver/Orange/Red lines). Maps of the Metrorail system are available online.

In addition to the hotel restaurant and bar, there are several dining options around the J.W. Marriott. Downtown Washington, D.C. is host to a variety of cuisines within a short distance to the hotel.



If you have additional questions about the conference, please contact the Public Policy Department at or toll-free at 1-877-444-ALSA.

Archived Conference Report and Photographs

2016  |  2015  |  2014  |  2013  |  2012  |  2011  |  2010  |  2009