This last year has seen incredible progress in the fight to create a world without ALS. The FDA approval of Relyvrio (AMX0035) in 2022 and Qalsody (tofersen) last month are significant steps in the effort to make ALS a livable disease. As we celebrate the success of these long-term investments, we continue to fund the next generation of possible treatments, as well as the researchers that are searching for them.
In March 2022, after several months of multiple doctor visits and many tests, Jacob Harper was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob is on the Jacifusen clinical trial trying to slow progression, as he shares his testimony with people from all over the world.
It's ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month, we’re highlighting eight easy ways you can get involved and help raise awareness of ALS, this month, and beyond.
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.
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).