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Wednesday, March 1, 2017

Our Voices are Stronger Together -- ALS Advocacy Conference in DC!

2017-als-advocacy-conf

ALS National Advocacy Conference Registration Now Open

There is a need to continue to educate Members of Congress about ALS and its true impact on people living with ALS and their loved ones. This is where you and your voice 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. Your personal story, delivered first hand, is one of the most powerful tools we have.
That is why The ALS Association invites you to join the entire ALS community as we unite in Washington, D.C. for the 2017 National ALS Advocacy Conference. This is our opportunity to share your ALS story and let Members of Congress know the true nature of the disease and why more must be done now.
The public policy priorities that The Association and the ALS community will be focused on this year include asking Member of Congress to 1) cosponsor the ALS Disability Insurance Access Act (S.379/HR.1171), 2) cosponsor legislation, soon to be introduced, to protect access to complex rehabilitation technology, and 3) appropriate $10 million each for both the National ALS Registry at the Centers for Disease Control and Prevention (CDC) and the ALS Research Program at the Department of Defense (DOD). For more information about the ALS Disability Insurance Access Act (S.379/HR.1171) click here.
This year’s conference will be held Sunday, May 14th – Tuesday, May 16th at the J.W. Marriott, in Washington, D.C. 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.
To attend the 2017 National ALS Advocacy Conference, please register online at www.ALSA.org/advocacy/advocacy-day. This website also provides information such as the hotel – the J.W. Marriott, travel information, a conference outline and other important information for participants.
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 are $25. The fee for non-affiliate attendees is $350.
For the J.W. Marriott hotel, the single/double occupancy rate is $299 plus tax per night; $319 + tax for triple occupancy; $339 + tax for quadruple occupancy; with a maximum of four guests per room. Once you register for the conference, you will be provided with a direct link to the J.W. Marriott’s reservations website.
In order to request an ADA accessible hotel room, you must contact Michael Coscia at adaroom@alsa-national.org. Your e-mail should include your hotel confirmation number. For all additional questions about hotel reservations or transportation, please contact Michael Coscia.
General questions about the 2017 ALS National Advocacy Conference can be sent to advocacy@alsa-national.org.
The voices on the Hill during the Fly In were heard well, but were just a start. Let us join forces to make our voices louder by participating in the 2017 National ALS Advocacy Conference. We look forward to seeing you there and working together to champion these important priorities for the ALS community!

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