"I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure." Katie Adams is an advocate for people living with ALS, like herself.
Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. Like most he struggled with this diagnosis at first. Then he realized that while he couldn't control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list'—a future he could live INTO.
In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.
Not to be deterred by the COVID-19 pandemic, ALS Association advocates from across the country held more than 350 virtual meetings with members of Congress Tuesday, adapting the Association’s longstanding annual Advocacy Conference to ensure the safety of participants. Historically, upwards of 600 ALS advocates gather in the nation’s capital for days of face-to-face meetings with their elected representatives in the Congress and the Senate.
With congressional leaders scheduled to begin work on additional stimulus legislation in response to the COVID-19 pandemic, The ALS Association is continuing to push to include protecting access to noninvasive ventilators (NIV) and to making sure people with ALS can access their Social Security Disability Insurance (SSDI) in the coronavirus response packages.
ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country.
It is with heavy hearts that we share that Stephen Winthrop, Chair of The ALS Association Board of Trustees and person with ALS, died peacefully early Monday morning. Our hearts are with his wife, Jane, and their two daughters.
(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.
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.
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.
In preparation for this week’s ALS Association Advocacy Fly-In in Washington D.C., we are giving a preview of our 2017 legislative priorities. Here we focus on the ALS Disability Insurance Access Act, which was introduced last week in the Senate and United States House of Representatives (S.379/H.R.1171).
Our friend Ted Harada passed away this week. Many of you may have known him. Ted was first diagnosed with ALS in August 2010 and immediately became a tireless advocate, volunteer, and voice of the ALS community.
