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ALS Association
Warm Summer Night, a Moment the Vickers Family will Never Forget
Many believe that all it takes is one song to bring back 1,000 memories, moments we hold dear and relive in our minds every time we listen to it. No one knows this better than the Vickers family, sharing their beautiful memories and storytelling through music, rhythm and melody.
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ALS Association
ALS Association to Host FDA, Industry in “We Can’t Wait” Action Meeting
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
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ALS Association
ALS Youth Action Day Celebrates its Third Year
To help empower kids in the fight against ALS, The ALS Association is celebrating the third annual ALS Youth Action Day on Saturday, May 15. It’s a day where kids across the country can take the ALS Youth Challenge and use the power of their creativity to help raise awareness and critical funds that help researchers around the world look for treatments and a cure while enabling people with ALS to live longer, higher quality lives.
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ALS Association
My Mother, the Heartbeat of Our Family
Susan Seabrook is a wife, a mom, a sister, and a caregiver for her mother living with ALS. In honor of her mother on this Mother’s Day, she is sharing her family’s personal story, their journey with ALS and many of the moments she cherishes most.
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Massachusetts Chapter
From the Desk of the Executive Director: May 2021
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter discusses how the efforts of the Chapter compliment May as ALS Awareness Month. This month's letter from our chapter's executive director outline exciting details about coming programs, COVID-19 policy updates, event developments, and advocacy initiatives.
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ALS Association
Behind Recent Changes at CMS to Expand Telehealth
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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ALS Association
Dr. Jan Veldink Receives 2021 Sheila Essey Award
Dr. Jan Veldink is receiving the award in recognition of his contribution to ALS epidemiology and genetics which have led to important novel discoveries including several new ALS risk genes. He has established a research line on ALS genetics, epidemiology and transcriptomics and has a proven track record in both array-based and sequencing technology. In addition, he has established an international biobanking register and patient database specifically for ALS, which is essential to be able to carry out Project MinE.
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ALS Association
Kevin Heller: A True ALS Hero
Since 2019, Kevin Heller -- a West Point graduate and U.S. Army veteran who was diagnosed with ALS at the age of 58 -- and his team #GiveEmHeller, put their hearts and souls into the nation’s top-grossing ALS fundraiser, the Napa Valley Ride to Defeat ALS and Walk.
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ALS Association
CMS Expands Telehealth Coverage for Speech-Language Pathology Services: Another Win for the ALS Community
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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Massachusetts Chapter
From the Desk of the Executive Director: April 2021
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter offers a comprehensive update about the goings on with local events, care services, and the promise that April brings for the entire Commonwealth.
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St. Louis Regional Chapter / ALS Association
Pattie Hamlin: A True ALS Hero
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
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ALS Association
Now Accepting Applications: The Jane Calmes ALS Scholarship Fund Launches Year Three
The ALS Association is now accepting applications for The Jane Calmes ALS Scholarship Fund for the upcoming 2021-2022 school year. Established in 2019, the scholarship is designed to support post-high school education for students whose lives have been impacted by ALS, with recipients receiving up to $5,000 per year to help cover the cost of education.
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