There can be no doubt this time of year means “back to school” to so many families around the country. As students return back to campus, this year, we wanted to take the opportunity to introduce you to some of this year’s recipients of the 2023 Jane Calmes Scholarship Fund.
As ALS progresses, the ability to participate by playing and creating music can become more challenging with the loss of motor function. But that doesn’t mean the ability to create music, and the ability to collaborate with others around music is entirely gone. Enter DuoRhythmo.
After retiring from a 50-year career in computer technology in 2015, Ken Baltes was finally able to follow his creative interests and focus on his passion for the arts. After he was diagnosed with ALS in 2020, he made it his goal to bring his love of the arts to others who are living with ALS.
Accessing insurance coverage for durable medical equipment is critical for people with ALS. However, too many private insurers either refuse to cover or set up insurmountable barriers for patients who desperately need access to the equipment they need to survive. Learn from people living with ALS and their families around the country who are facing these difficult challenges every day.
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.
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.
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.
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.
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.
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.
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 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.