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.
84 years ago on July 4, 1939, Lou Gehrig gave his "Luckiest Man" speech and brought international attention to ALS. His legacy continues to raise ALS awareness and support in the search for a cure.
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.
The ALS Association has launched two new grant funding opportunities designed to support research focused on better management of the disease and reduction of its complications. These grants, worth several million dollars over the next two years, will fund the development of new assistive technologies and strengthen the quality of ALS care.
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.