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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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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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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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ALS Association
A Spotlight on ALS Advocacy for 2021
The ALS Association supports ACT for ALS and the Promising Pathway Act as they were originally introduced in the last Congress. Following the 2020 election, a new Congress was sworn-in in January of 2021. The legislative process requires that both bills be reintroduced to the newly elected Congress, and we are working with our congressional champions to reintroduce them as soon as possible. We believe both bills will make a positive impact on people living with ALS and look forward to working with the community and Congress to pass them.
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Minnesota/North Dakota/South Dakota Chapter / ALS Association
Geraldine Skager: A True ALS Hero
“To say that Gae Skager has been a beacon of hope in the ALS community is a significant understatement,” says Anne Supplee, Care Services Coordinator from The ALS Association Minnesota, North Dakota, South Dakota Chapter. “Since her diagnosis in 2003, Gae has made it her mission to educate others, raise awareness and fund research for ALS.”
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Florida Chapter
Guest Speaker: Jean Mendolia, RD
Jean Mendolia, RD, clinical dietitian at the Phil Smith Neuroscience ALS Clinic, gives nutrition advice to people living with ALS.
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Florida Chapter
Guest Speaker: Jeanne Struve, RD/N, LD
Jeanne Struve, RD/N, LD, dietician/nutritionist from the Affiliated ALS Clinic at Lee Health, gives nutrition advice to people living with ALS.
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Northern Ohio Chapter
Applications open for 2021-22 The Jane Calmes ALS Scholarship Fund
The purpose of the scholarship fund is to provide financial assistance to students pursuing an accredited college degree or vocational certificate, and whose ability to cover the costs is severely compromised as a result of their family’s financial burden of ALS.
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DC/MD/VA Chapter / ALS Association
Vicki Sawyer: A True ALS Hero
Once she was diagnosed with ALS, the determination she showed throughout her life immediately took hold. Her attitude was “let us fight”, and her motto instantly became, “So What, Now What!”
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ALS Association
Preparing for a Medical Emergency While Living with ALS
People living with ALS will likely experience complications related to the disease that warrant a visit to the hospital at some point in their journey. At the same time, they are not immune from other injuries or medical issues—people with ALS can still get sick or possibly hurt themselves in ways unrelated to the disease. Making the conscious choice to be prepared can make all the difference.
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ALS Association
Reasons for Hope in ALS Research with the Discovery of NU-9
In a study funded in part by The ALS Association’s TREAT ALS program, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS. While this news is exciting, this study has only tested the compound in mice and in laboratory neurons and is in the very early stages.
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