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.
Larry Falivena, member of The ALS Association’s Board of Trustees who is living with ALS, shares his unique experience with the disease and his perspective on genetic testing.
The ALS Association established a nationwide state policy and advocacy department committed to empowering people living with ALS and their families to fight for better public policies in their community.
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 I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
Jared Salomon lost his father to ALS in October of 2020 when he was just 29 and planning his engagement to his now beautiful wife, Maryn. While his father was not around to physically attend his wedding, he was there in spirit and left an amazing gift for his family and friends; a memory that will live on and be cherished forever.
In most people’s journey with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. We spoke with Craig Kloss and asked him to share his story about his personal experience with making this difficult decision, and the relief he and his family felt once they had made it.
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.
Looking back on the beginning of 2022, I would have never anticipated telling my family’s story to so many with the help of The ALS Association. I was working two jobs as a nurse, transitioning to another clinical position, all while trying to support my husband Lamar (diagnosed with ALS in 2018) with his goals toward completing his college degree, and maintaining the busyness of motherhood, raising our 8-year-old daughter.
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.
When I was diagnosed with ALS in 2018, my wife Kristina and I knew we were in for the fight of our lives. But I don’t think we were truly prepared for the devastating impact it would have on our family.
Cole Thompson and Lamar Woody have been friends since the seventh grade, although Cole readily admits he had lost touch with his friend after college. Cole moved away from Auburn, Alabama, and life took him and Lamar in different directions. Then one day Cole saw a GoFundMe page someone had created for Lamar and his family after Lamar was diagnosed with ALS. “From there, Lamar and I started chatting again on Facebook, and rekindled our friendship,” Cole says.
Natalie Woody was only four and a half years old when her father Lamar was diagnosed with ALS in 2018. Full of personality and spirit, Natalie’s parents agree that she’s no different than any other child her age, she just happens to have a dad who has ALS.
The ALS journey is difficult, so whether it is family, or friends or community volunteers, finding people who are willing to help, and accepting the help they are able to give, can make all the difference. We had the privilege of sitting down with the Woody family’s “village,” to talk about ALS, how it impacts their everyday life, and their incredible devotion to be a part of the family’s ALS journey. Here’s what they had to say.
Kayla met Lamar Woody back in 2017 at the music store where he taught voice and piano lessons. As her very first vocal coach, Lamar will always have a special place in her heart. He not only taught her how to sing and use her voice, he taught her about ALS.
