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.
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.
The ALS Association recently submitted a series of regulatory filings to reduce administrative burdens placed on people living with ALS. The filings are in support of administrative rule changes at the Centers for Medicare and Medicaid Services that would reduce some administrative delays by improving prior authorization claims processes, instituting how and when Medicare Advantage plans develop and use coverage criteria and utilization management policies, and ensure that Medicare Advantage coverage policies are equivalent to traditional Medicare coverage.
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.
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.
The ALS Association and the Focused Ultrasound Foundation are partnering to advance transformational treatments for people with ALS. Leveraging a $500,000 ALS Association Partnership Grant and $500,000 in matching funds from the foundation, this new collaboration will support research into diagnosing and treating ALS using focused ultrasound technology.
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.