Advocacy Day 2017 Highlights

On May 14- 16 more than 600 advocates took part in a very successful National ALS Advocacy Conference here in Washington, DC. Of the 600 advocates, 130 were people living with ALS. On Sunday and Monday, national experts and officials briefed participants on The ALS Association priorities and other “hot topics” that they might encounter in their congressional meetings and Chapter Executives prepared their state delegations for Hill meetings.

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Concerns About President Trump’s Proposed Budget Cuts

Last week, President Trump submitted his budget request to Congress. Included in the proposal are changes to funding for Medicaid, cuts to Social Security Disability Insurance (SSDI), cuts to the National Institutes of Health (NIH) and the complete defunding of the National ALS Registry at the Centers for Disease Control (CDC). The ALS Association is very concerned that these proposals will negatively impact people affected by ALS and will slow down the progress we have made in research for treatments and a cure. We do not believe this is a partisan issue – Members of Congress on both sides of the aisle have expressed concerns about the cuts contained in the President’s budget.

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Q & A with Stephen Winthrop, Chair, ALS Association National Board of Trustees

Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight. Stephen first joined the Association as a Trustee in 2015. He brings his expertise in fundraising, financial management, grant writing and information management services for non-profit organizations gained from a career in management consulting. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS. We are proud to be led by such a great leader and tireless ALS advocate.

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Advocacy Stories Inspire Hope

Thank you to the over 600 people that descended on Capitol Hill on Tuesday during The ALS Association’s 2017 Advocacy Conference. So many advocates shared their stories to inspire their local legislators to support important ALS initiatives. Of those in attendance, 286 people were first time participants. Nearly every state in the country was represented, and most importantly, 128 people living with ALS made the trip to Washington, DC. Over 400 legislative offices were visited on both sides of the aisle.

Photo Highlights from a Day on the Hill:

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Karolina Phelan and her two beautiful daughters Emma and Sophia from the Greater Philadelphia Chapter lost their husband and father to ALS. Hear from this special family sharing their story with Congresswoman Bonnie Watson Coleman.

Donate today to support the fight against ALS.

The National ALS Biorepository Launched – “Learn How to Participate”

By: Our Colleagues at ATSDR

One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).

The Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Biorepository as a part of the Registry in January 2017. This launch came after a pilot study that showed it was feasible to include a biorepository. The Biorepository is collecting biological samples from persons with ALS. It’s different from other biorepositories because it does not limit who can take part to a specific area, study, or clinic. This means that participants’ samples may help researchers everywhere work toward better understanding the causes of, and possible treatments for ALS.

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PREVIEW: 2017 National ALS Advocacy Conference – Register Now

More than 500 people have already registered for the 2017 National ALS Advocacy Conference and time is running out to sign up. This conference is an annual opportunity for our advocates – people living with ALS, their families, friends, doctors and researchers – to share the ALS story and let Members of Congress know the true nature of the disease and why it is important to take action immediately.

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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!