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.
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.
While knowledge is power in many circumstances, knowing you have lost several members of your family to familial ALS, and understanding you may also carry the mutated gene, can be a heavy burden to live with. With technology continuously evolving, new potential treatments in the ALS research pipeline through clinical trials and the ability to get answers through a genetic test, there are more factors to consider today than ever before. Peter Hackett shares his family's ALS story and what led him to the decision of taking the genetic test.
For people with ALS, an occupational therapist (or OT) is there to help them maintain their independence for as long as possible as well as to find ways to maintain their quality of life. April is Occupational Therapy Month, so what better time to explore the many, and varied, ways an OT can make a difference.
We are forever grateful for the many volunteers working with us to create a world without ALS. Volunteers like Mike Koehler in Kansas City, Missouri make a big impact. Mike leads the volunteers for all three of their Kansas City events, including a gala, a golf tournament and the Kansas City Walk to Defeat ALS®. He organizes the volunteers and acts as their main point of contact, managing and assigning tasks on the day of the events.
The ALS Association is accepting applications for The Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
Diagnosed with ALS in 2011, SDSU’s Assistant Coach, Mark Fisher, has helped lead the Aztecs to eight consecutive 20-win seasons during his career, an incredible accomplishment for any coach. And now, adding to his list of accolades, Mark will become the first known person living with ALS to coach in a Final Four when the Aztecs take on the Owls of Florida Atlantic University tomorrow night in Houston.
The YCare youth caregiving training program was developed to meet the needs of young caregivers who care for the adult in their life living with ALS. At the International Alliance of ALS/MND Association meeting in late 2022, the creators of the YCare program and a team of local experts presented on how they are translating the YCare program, in some cases quite literally, for use in South Africa.
The FDA advisory committee vote on tofersen Wednesday was an exciting and critical moment in the ALS community’s efforts to find new treatments and cures. The committee voted unanimously to recommend accelerated approval of the new treatment.
With the emergence of gene-targeted therapies, knowing whether your ALS has an underlying genetic cause is becoming more important. Research has shown that about two-thirds of people with familial ALS and about 10% of people with sporadic ALS (no family history) have a mutation (or change) in at least one of the more than 40 genes that have been linked to the disease.
The ALS Association established a nationwide state policy and advocacy department committed to empowering people living with ALS and their families to fight for better public policies in their community.
The Walk to Defeat ALS® is open to everyone, and fundraising is just one of many reasons people participate. We asked several members of the ALS community to share why they walk, and here’s what they had to say.
March is National Nutrition Month, and since maintaining proper nutrition is so important for people living with ALS, we wanted to highlight the critical role of one member of the ALS care team: the registered dietitian (RD).
When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
In most cases, a person with a mutation in an ALS-linked gene usually has a 50-50 chance of passing it on to their children. But just because someone inherits an ALS-linked gene, it does not automatically mean they will develop the disease, and family members who develop ALS may have different disease experiences.
For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.