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

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

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ALS National Advocacy Conference Registration Now Open

by The ALS AssociationMarch 1, 2017Leave a comment

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!

What Advocacy Means to Me--Perspectives from PALS about going to Capitol Hill

What Advocacy Means to Me--Perspectives from PALS about going to Capitol Hill

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reprinted from Pathways Newsletter, ALS Association Greater Philadelphia Chapter Spring 2011


Have you considered becoming an ALS Advocate? Join hundreds of people from across the country on May 8-11, 2013 at the National ALS Advocacy Day and Public Policy Conference in Washington DC, and see for yourself the difference you can make in the ALS community!

The conference includes breakout sessions about research and other issues affecting people with ALS, and culminates in a Day on the Hill, where we meet with our members of Congress to share the ALS message and enlist their help with legislation to improve the lives of those living with this disease.

For more information or to register, visit http://www.alsa.org/advocacy/advocacy-day
Here’s what others are saying about becoming an ALS Advocate:

Advocacy doesn‟t require skill or a huge time commitment. The only knowledge you need is the personal experience you have had living with the disease. Advocacy may seem intimidating at first, but once you have faced a diagnosis of ALS, nothing can ever truly frighten you again.

– Jayne Cawthern, Boalsburg, PA

Being the "face of ALS" to our Congressman and Senators has been a really positive experience for me and my wife. We've had the opportunity to support the ALS Registry Act , increased federal funding for ALS specific research through the National Institute of Health and increased funding for research through the Department of Defense. It is truly empowering to help our elected officials understand how ALS impacts PALS and their families.–Keith Canady, Wilmington, DE

We are keenly aware of how uplifting it has been to meet with ALS people from all over our country, joined in an incredible effort to clearly present our special needs to Congressional representatives. No matter how cynical you might be about our ability to have any impact, you first notice that the Senators, Representatives and their staffs with whom you meet do listen and try to understand.–Kathryn & Gerry Voit, Cheltenham, PA

Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS. It is good to know that we are not alone and there are so many people working every day in the effort to find a cure and to treat ALS patients.–Stephen Potter, West Chester, PA

I was empowered by the experience of going with others to congressional offices to advocate for ALS. It was fascinating to learn so much about how government works and gratifying to realize that I was having an impact on getting research money for ALS. And throughout all these activities, I was moved by the kindness and solidarity of the ALS community - patients and their families, medical caregivers and researchers; I heard so many stories and made so many friends.– Mary McConaghy, Philadelphia, PA

I went to Washington to let our Congressional representatives hear about my experience as an ALS patient. Getting additional funding for research and also the National ALS Registry, will provide much needed research data that will help all ALS patients. Our representatives were very receptive to our needs, and willing to help in our efforts.
 – Arlene Gordon, Downingtown, PA

Being involved with Advocacy work for the ALS Association gives me the opportunity to give back to an organization that was a lifeline when my best friend struggled with her battle with ALS.– Maureen McPeak, Carlisle, PA

One of the frustrating things about being diagnosed with ALS is the feeling that there's nothing that can be done about it. However, I've found that participating in advocacy can be a way to do something about a situation that nothing can be done about. Through state and national advocacy efforts, I've been able to make a tangible difference in the fight against ALS.– Wes Rose, Glenside, PA