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.

Online registration for the conference is closed. If you would like to register, or make changes to an existing registration, please contact The ALS Association at advocacy@alsa-national.org.

 

Conference Overview

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

Conference registration will begin at 11:00 am Sunday morning at the JW Marriott and continues until 7:00 pm that day. Conference registration will re-open on Monday morning at 8:00 am and continue until 4:00 pm.

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.

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Additional Conference Attendee Information

The 2017 Advocacy Confirmation Guide is available here. This guide provides updated logistical information, as well as materials to help you prepare for your Capitol Hill meetings. On Thursday, May 4, The ALS Association hosted a webinar to provide participants updates. A recording of the webinar is available here and the Power Point presentation is available here.

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Hotel Information

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

The room block at the J.W. Marriott has closed. If you need to make adjustments to your reservation, please contact Sarah Weissmann at sweissmann@alsa-national.org.

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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 adaroom@alsa-national.org. 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 adaroom@alsa-national.org.

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Certified Nursing Assistants/Licensed Practical Nurses

We are pleased to let you know that The ALS Association has partnered with Lifematters, a home health nursing agency, to provide services for our ALS advocates during their attendance at our upcoming conference. If you know someone who may need a Certified Nursing Assistant (CNA) or a Licensed Practical Nurse (LPN) for any part of their time at the conference, they can request one by completing and returning the Professional Care Registration and Client Agreement forms by May 9th. Completed forms should be returned to Tania Ballantine at tballantine@alsa-national.org or faxed to 202-464-8869.

Please note that the National Office will be paying for services rendered for all authorized patients. The patient/family will have no payment responsibility.

Please direct any questions to Tania Ballantine at tballantine@alsa-national.org or 202-464-8633.

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Durable Medical Equipment Rentals

If ALS Advocates need a wheelchair or any additional Durable Medical Equipment (DME) during their visit to Washington, DC, they can contact Roberts Home Medical Company at 1-800-807-7290.

Loaner equipment will not be available at the hotel. Advocates may want to consider renting a wheelchair, even if they do not currently use one, as the day on the Hill can involve several trips between buildings and may be very tiring for ALS patients. The company will deliver the equipment to your hotel before the Conference starts and will pick it up from the hotel after the Conference ends.

Please note: if you are renting a hospital bed or if you will be using a hoyer lift, please notify Michael Coscia at adaroom@alsa-national.org, as the hotel must be made aware in advance of your stay.

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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 alsinfo@alsa-national.org 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.

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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.

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Meetings with Your Legislators

A highlight of the Advocacy Conference is spending Tuesday on Capitol Hill meeting with members of Congress. Chapter staff should be in touch to help schedule your meetings.

You will receive materials for your Capitol Hill meetings at the conference. There are helpful hints and materials to help you prepare for your meeting available in the Confirmation Guide. First time participants are encouraged to attend the Advocacy 101 session at 1:00 pm on Sunday, May 14.

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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.

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Questions

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

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Archived Conference Report and Photographs

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