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.
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.
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.
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.
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 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.
When Anjo Snijders was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. For both Anjo and Sascha, honesty with their children, age just seven and two at the time, was of great importance. Both teachers by trade, they began to look for resources to help explain their daddy’s illness, but found little if anything. And with that, the story of Luki and the Lights was born.
Stephen Hawking, the world-renowned British scientist, professor, and author, is regarded as one of the most brilliant theoretical physicists in history. But what Stephen was also well-known for was his extraordinary life living with ALS for more than 55 years. To celebrate what would have been his 81st birthday, one elementary school in Seattle is honoring his legacy by inspiring young readers to learn more about ALS while helping to fight the disease that took his life.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and inspiring stories from around the country, The ALS Association’s blog covered it all in 2022. Here is a quick look at the top ten posts our readers enjoyed most.
Lamar and Kristina Woody are a lot like any other busy, hard-working couple. They’re juggling careers, education and the day-to-day activities of their sassy and smart nine-year-old daughter, Natalie. Married for over twelve years, they love laughter, music and spending time with family and friends, living their life focused on love, friendship and positivity. They are also living with ALS.
Jake met Bill Wechsler during his freshman year in high school in Holliston, MA. Challenged with academic and mental health issues at the time, Jake was referred to Bill who was the school social worker for counseling and support. By the spring of his junior year, Jake had made so much progress he no longer needed the formal counseling he had become accustomed to, but he still frequently visited Bill to spend time talking with him. It was around that same time that Bill was diagnosed with ALS.
Today, in Major League ballparks across the country, fans will take part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families. And no baseball fan is more excited than Larry Falivena.
Dr. Bridget Stegman was diagnosed with bulbar onset ALS in February 2022. She and her family have been embraced by their community, who have showered them with love and hope as they rally together to spread awareness of this disease.
Long-time natives of Colorado, Ellen and Lorenzo enjoyed an active busy lifestyle. Until ALS entered the picture, their plans for living a long and full life were all they dreamt about.
Diagnosed with ALS last spring, Heidi Tarr Henson, Ed.D., shares thoughts about her personal journey living with the disease and what real awareness of ALS means to her.
In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
Many believe that all it takes is one song to bring back 1,000 memories, moments we hold dear and relive in our minds every time we listen to it. No one knows this better than the Vickers family, sharing their beautiful memories and storytelling through music, rhythm and melody.