Motivated by the profound impact of ALS on their lives and families, Alex and Cory decided to use their shared passion for golf, and both their fathers' love of the sport, to make a difference. They envisioned creating an annual event that would raise both awareness and funds for ALS research and support, and with that the ‘100-Hole Challenge to Beat ALS’ was born.
Lluvia Alzate started doing pageants in hopes to have the platform needed to spread ALS awareness, while her mom Fanny was battling ALS. Fanny passed away in December 2022, and Lluvia continues to honor her memory. She was crowned Miss Houston USA 2023 and is competing in Miss Texas USA 2023 this summer.
Since 2019, The ALS Association Roundtable Program has provided a forum for candid, facilitated discussions that guide our strategy for ALS care, advocacy and research. Here are just a few examples of how Roundtable discussions have been turned into positive action for people living with ALS and their families.
Every year on June 21, The International Alliance of ALS/MND Associations marks Global ALS/MND Awareness Day, a day of recognition for people living with ALS/MND around the world, and of those everywhere working in the search for causes, treatments and ultimately a cure. This is an opportunity for everyone, everywhere in the ALS/MND community to get involved.
On a recent Connecting ALS podcast episode, we spoke with Dr. Terry Heiman-Patterson, Professor of Neurology at the Lewis Katz School of Medicine at Temple University and Director of the Temple MDA/ALS Center of Hope, to learn more about her work looking into ways to expand access to clinical trials for historically underserved populations.
Sydney’s father was diagnosed with ALS in April of 2017, but it did not stop him from living the rest of his life to the fullest and encouraging others to do the same. Sydney knew ALS could not take away her dad’s love of adventure, and she wanted to find a way to continue that love even when he no longer could. He passed away in 2018, but Sydney took on his bucket list as her own.
We talked with Dr. Miriam Linsenmeier, a postdoctoral fellow at the University of Pennsylvania’s Perelman School of Medicine, to learn more about her research, as well as her interests outside the lab.
The Hero Award is the highest honor given by The ALS Association. Each year, we recognize people living with, or who have lived with, ALS who have made a significant impact in the fight against the disease. This year’s honorees—Patrick Dolan, Steve Kowalski, Joel Shamaskin, David Tomassoni—have all made a lasting impact for the ALS community.
Dr. Laura Ranum, director of the University of Florida’s Center for NeuroGenetics and the Kitzman Family Professor of Molecular Genetics and Microbiology, is currently conducting a phase 2 trial for C9orf72-linked familial ALS with support from the Association’s Clinical Trial Awards Program.
Since 2021, June 2 has been celebrated as Lou Gehrig Day by MLB in ballparks across the country, a day to help spread awareness and raise funds for people living with ALS and their families. June 2 marks when Gehrig became the New York Yankees starting first baseman in 1925—the start of his incredible streak of consecutive games played—as well as the day he passed away from ALS in 1941.
As ALS Awareness Month 2023 comes to a close, we wanted to take time to reflect, look back on the people we’ve met, celebrate the ongoing wins in the community and thank you for sharing, listening and growing this movement!
The ALS Association has launched My ALS Journey™, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.
Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.
For people with ALS, multidisciplinary care has been shown to extend survival and improve life quality. We are committed to expanding this network insuring people with ALS, regardless of where they live, have access to this type of critical care.
Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. Like most he struggled with this diagnosis at first. Then he realized that while he couldn't control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list'—a future he could live INTO.
It is always gratifying when hard work pays off, and for the ALS community, there have been many policy wins to celebrate recently. These successes are the direct result of the efforts of more than 40,000 ALS advocates across the country, working tirelessly with The ALS Association to make an impact for people living with the disease.
Lindy Anne Lund passed away last year from ALS. She is the mother of Olympic gold medalist, Lindsey Vonn, as well as four other children who are spending their first Mother's Day without her. Lindy's daughter, Laura, discusses how the whole family was affected by their mother's ALS diagnosis from the beginning, middle and end.
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.