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.
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.
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.
“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.”
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.
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.
Minnesota/North Dakota/South Dakota Chapter /
“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.”
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.
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.
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.
While local conditions for events vary state by state, the priority is the safety and well-being of people with ALS, their families and caregivers, and our volunteers and staff. So while Walk to Defeat ALS® events may look a little different from place to place, the ALS community will creatively come together safely in local markets to honor a loved one with the disease, to remember those who have passed, and to raise awareness and critical fundraising support for the fight against ALS.
On the one year anniversary of COVID-19 shutting down the world, Executive Director John Hedstrom of The ALS Association Massachusetts Chapter pens a letter to update the local community on the Chapter's ambitious goals and an exciting new event.
While good nutrition is important for everyone, maintaining proper nutrition and hydration is especially critical for people living with ALS. Sustaining a healthy weight and balanced diet is proven to help improve and maintain quality of life for people struggling with the disease.