For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.

We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.

Each year we go to Capitol Hill to ask for federal funding for ALS research. We ask members to support appropriations for the National ALS Registry at the Centers for Disease Control, the ALS Research Program at the Department of Defense, and ALS research being done through the National Institutes of Health.

“I don’t know how I would have done this without your guidance.” Joumana Baroody heard words like these many times throughout the nine years she worked as a nurse at the ALS Clinic at the University of Chicago. They were spoken by people diagnosed with ALS and their families and caregivers.

Late last month, Congress passed a $1.3 trillion fiscal year 2018 Consolidated Appropriations spending bill that included a $3 billion increase to funding for medical research to the National Institutes of Health (NIH). Funding to the NIH has increased to $37 billion, the largest bump they have seen in years.

Do you have a passion for making your voice heard and empowering others? Do you want to make a difference in the lives of people with ALS? The 16,000+ advocates for The ALS Association are people living with ALS, family members, friends, caregivers, researchers, scientists, and healthcare professionals who are ready to see a world without ALS.

Held March 20-21, the annual ALS Advocacy Fly-In was very successful, as The ALS Association’s executives, staff, and board members acted boldly to fight for a cure for ALS. On March 20, Fly-In attendees heard presentations from numerous speakers, including Mark Vieth from CRD Associates, Dr. Steve Landers from the Visiting Nurse Association Health Group, Inc., and leaders from The ALS Association’s Iowa and Greater Philadelphia chapters.

The ALS Association fights for people with ALS every day, leading cutting-edge research to discover treatments and a cure for ALS, and serving, advocating for, and empowering people with the disease to live their lives to the fullest. In honor of Throwback Thursday, let’s look back at the advances in our mission areas of Advocacy, Care Services, and Research during 2017.

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

(This is the first article in a five-part series highlighting the 2018 recipients of The ALS Association Heroes of Hope Awards.) Mike Maloney is one of the reasons we provide care services to people living with ALS, advocate for legislation that greatly impacts the quality of life of those living with the disease, and fund research toward treatments and a cure for ALS.

On February 12, 2018, the FDA announced its DRAFT Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment - Guidance for Industry. A copy of FDA’s draft guidance can be found here.

The Steve Gleason Enduring Voices Act (S. 1132 and H.R. 2465), which would permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases, was included in the government funding package approved by the U.S. House of Representatives last night.

We bring the ALS community together to speak with one voice to increase awareness, advocate for research funding, and educate legislators – impacting thousands of people with ALS and their families. This advances our mission to discover treatments and a cure, and to serve, advocate for, and empower people living with ALS to live their lives to the fullest.

Doug Clough is a fearless ALS advocate from Gilbert, Ariz., who has made it his mission to make a huge impact on people living with ALS. Despite his ALS diagnosis in April 2014, he keeps going. He is involved in ALS advocacy in every way possible, from participating in The ALS Association National Advocacy Day to serving on the National ALS Registry task force to becoming a Northeast ALS Consortium (NEALS) Research Ambassador to participating in an ALS clinical trial, and this year being awarded the Iron Horse Award.

As ALS progresses, people living with the disease heavily depend on complex rehabilitative technology (CRT), especially their personally customized power wheel chairs. The ALS Association played a critical role both through direct lobbying and grassroots advocacy to win support for legislation to convince the Centers for Medicare and Medicaid Services (CMS) to abandon plans to apply competitive bidding to CRT. This makes it possible for people living with ALS to continue to obtain the CRT equipment that is customized to their needs.

Meet Larry Harms. Larry is a father, grandfather, decorated Air Force veteran and tireless ALS advocate from Colorado. When you meet Larry, his wonderful sense of humor, optimism and love for life is immediately apparent. We recently sat down with Larry and learned how determined he is to live life to the fullest despite his diagnosis.

Dr. Brian Wainger of Massachusetts General Hospital and Stephen Winthrop, Chairman of The ALS Association Board of Trustees, gave their unique clinical trial perspectives during the Northeast ALS Consortium (NEALS) webinar titled, “Retigabine Clinical Trial Update & Discussion with ALS Patient Advocate Stephen Winthrop.”

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.

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).

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.