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121 results
ALS Association
ALS Association Comments on Draft Payer Policies that Refuse to Cover Qalsody
The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation.
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ALS Association
ALS Advocacy Action Month Starts Today!
August is ALS Advocacy Action Month, an opportunity for you to join with other advocates in your own home state and push for changes in policies that affect the lives of people with ALS. Throughout this month, advocates will share their personal experience with ALS and urge members of Congress to increase funding of critical research to find new treatments and a cure.
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ALS Association
Increased Federal Funding to be Focus of August Advocacy Action Month
In August, ALS advocates across the country will be meeting with members of Congress in their home district offices, pressing for public policies that will make ALS livable while accelerating the search for new treatments and ways to cure the disease. Learn more about Advocacy Action Month and how you can get involved to help the ALS community.
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ALS Association
Advocating to Break Down Health Insurance Barriers
We spoke with Kara Nett Hinkley, national vice president of state policy at The ALS Association and member of the National Association of Insurance Commissioners' Consumer Advisory Board, to discuss some of the important work being done to break down barriers to accessing health care.
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ALS Association
Katie Adams: Fighting for Change for Everyone with ALS
As an occupational therapist, Katie Adams had a keen sense of what was happening to her body when her ALS symptoms first started and was pretty sure she knew why. Little did she know her intuition would not only prove to be correct but would lead her to fighting for access to the care and equipment she needed just to live.
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ALS Association
Breaking Barriers: The Fight to Make Health Care Affordable and Accessible
Health insurers can play a critical role in making ALS livable for everyone, everywhere, but all too often barriers are erected that prevent people from accessing the health care services they need. We discuss the different barriers families affected by ALS have to face and The ALS Association's fight alongside them.
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ALS Association
Meet Our 2023 ALS Hero Award Recipients
The Hero Award is the highest honor given by The ALS Association. Each year, we recognize people living with, or who have lived with, ALS who have made a significant impact in the fight against the disease. This year’s honorees—Patrick Dolan, Steve Kowalski, Joel Shamaskin, David Tomassoni—have all made a lasting impact for the ALS community.
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ALS Association
Jessy Ybarra: Living His Best Life with ALS
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.
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ALS Association
ALS Advocates: Making Their Voices Heard Across the Nation
It is always gratifying when hard work pays off, and for the ALS community, there have been many policy wins to celebrate recently. These successes are the direct result of the efforts of more than 40,000 ALS advocates across the country, working tirelessly with The ALS Association to make an impact for people living with the disease.
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ALS Association
Tofersen Approved for SOD1-ALS
The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.  
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ALS Association
Association Volunteers Lend Time to Push for Increased Federal Funding for ALS
ALS volunteers and leading advocates held more than 200 meetings with members of Congress and their staff during The ALS Association’s virtual fly-in event on April 19, focused largely on securing increased federal funding for ALS research. Advocates from across the nation made over 250 calls to their members of Congress to support our appropriations requests.
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ALS Association
Volunteering to Help Support People Living With ALS
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.
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ALS Association
Seeking Justice for ALS Veterans
In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.
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ALS Association
The Fight to Make Air Travel Accessible for All
While the travel industry is paying greater attention to the special needs of people with mobility challenges, much more needs to be done to ensure everyone has equal access to safe air travel. The Air Carrier Access Amendments Act is designed to do just that.
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ALS Association
Medicare Open Enrollment Begins October 15—Understanding Your Options
Medicare open enrollment begins this Saturday, the period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. Understanding exactly what’s available will help you make the critical decisions you need.
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ALS Association
AMX0035 Approved! How We Got Here and What Comes Next
The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. When the results of that trial showed it was safe and effective in treating ALS, the ALS Association led an advocacy campaign to push the FDA to approve the drug. After two years of advocacy, the FDA finally approved AMX0035. 
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