The ALS Association and I AM ALS on Friday submitted a petition to the Food and Drug Administration calling on the agency and Amylyx Pharmaceuticals to act swiftly and with urgency to make AMX0035 available as soon as possible. The petition was signed by more than 50,000 people from across the country who have been affected by ALS.
Voting safely during a pandemic is challenging enough, but what do you do if you're high risk for contracting the coronavirus and facing mobility and motor function challenges? While the 2020 election is now just days away, it’s more important than ever to understand your rights, the voting options available in your state, and make your plan to share your voice.
Before his diagnosis, John Russo had two fears: the first was getting attacked by a shark while fishing at night, and the second was being diagnosed with ALS. He managed to avoid the sharks, but not ALS. After taking a few weeks to process what the rest of his life would look like, he realized he needed to face down his biggest fear and keep going. He found a new purpose: making life better for people living with ALS across the country, as well as deepening research efforts to learn more about the disease.
More than 43,000 people signed The ALS Association’s petition, launched September 3 with I Am ALS, to call on the FDA and Amylyx Pharmaceuticals to work together to speed up the process of getting AMX0035 available for people living with ALS as quickly as possible.
The ALS Association and I AM ALS have launched a petition calling on the FDA and Amylyx Pharmaceuticals to bring AMX0035, a promising new drug developed by Amylyx, to market as soon as possible.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.
We support the A.C.T. for ALS Act (H.R. 7071) and believe it should be strengthened by helping fund ALS research and by ensuring people with ALS in clinical trials can continue receiving treatments that may be helping them. We believe these steps will help improve its chances for passage and ensure it helps even more people with ALS.
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.
The ALS Association joined with 32 consumer and patient advocacy organizations in calling on Congress to enact legislation in response to the COVID-19 pandemic that protects and expands access to quality, affordable health insurance.
The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.
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.
Letter to Congress calls for swift action to expand access to health care and facilitate social distancing. The ALS Association cosigned a letter with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations.
We are getting enthusiastic feedback and questions about our partnership with Project ALS to fund a clinical research project for jacifusen, an experimental therapy being developed at Columbia University’s Eleanor and Lou Gehrig ALS Center for FUS-associated ALS. We thought it would be helpful to describe the strategy underlying the project.
Tommy May, a member of The ALS Association National Board of Trustees, published a column in Morning Consult, a leading digital media platform among lawmakers, today urging Congress to protect access to noninvasive ventilators. May was diagnosed with ALS in 2005. He has used a ventilator since 2013 when his disease progression made it difficult for him to breathe on his own.
The ALS Association and 23 partners that represent millions of patients across the country released a statement strongly supporting the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month’s Texas v. United States ruling. The ruling endangers patient access to adequate, accessible and affordable health care.
Court Ruling leaves Affordable Care Act’s (ACA) provisions in place, including protections for pre-existing conditions for people with ALS and other Americans. But the court keeps the long-term future of ACA in limbo.
A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets, and held more than 700 meetings in the past year to secure full federal funding of ALS research.
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
