Eric wanted to share his story about his journey with the world, about his colorful past and his inspiring present living with ALS. So, he and his family joined up with filmmaker David Gaynes and his team at DG Filmworks, creating a heartening documentary, “A Spirit in Flight”; an intimate portrait of Eric, his life, and how he is living life to the fullest after his diagnosis with ALS.
People living with ALS and their caregivers face substantial financial burdens accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and tremendous debt for individuals in the ALS community. No one understands this more than Jimmie and Dennis Thomasson in Mobile, Alabama.
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.
Sally Dwyer is the Director of Mission Strategy & Integration for the Mid-America Chapter at The ALS Association. She has worked with the Association for 26 years and has experienced many moments and milestones throughout her career serving people impacted by ALS.
This week the Lightning Foundation and the Lightning Community Heroes program honored Gary Dassatti for being a courageous, selfless, and noble leader who has championed the fight against ALS
Since 2019, Kevin Heller -- a West Point graduate and U.S. Army veteran who was diagnosed with ALS at the age of 58 -- and his team #GiveEmHeller, put their hearts and souls into the nation’s top-grossing ALS fundraiser, the Napa Valley Ride to Defeat ALS and Walk.
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
The ALS Association is now accepting applications for The Jane Calmes ALS Scholarship Fund for the upcoming 2021-2022 school year. Established in 2019, the scholarship is designed to support post-high school education for students whose lives have been impacted by ALS, with recipients receiving up to $5,000 per year to help cover the cost of education.
“To say that Gae Skager has been a beacon of hope in the ALS community is a significant understatement,” says Anne Supplee, Care Services Coordinator from The ALS Association Minnesota, North Dakota, South Dakota Chapter. “Since her diagnosis in 2003, Gae has made it her mission to educate others, raise awareness and fund research for ALS.”
Once she was diagnosed with ALS, the determination she showed throughout her life immediately took hold. Her attitude was “let us fight”, and her motto instantly became, “So What, Now What!”
ALS can take away many things, but one thing it cannot take away is love. In celebration of Valentine’s Day, we wanted to highlight one of many stories of love, commitment and ALS. Meet Jonathan and Janetta Michelsen.
As Feeding Tube Awareness Week comes to a close, we spoke with Brenda and Kelly Kraft and asked them to share their family’s story about their personal experience with making this difficult decision, and the relief they felt once they had made it.
This week the world turned their focus to the celebration of women and girls in science, shining a light on the tremendous gender gap that still exists in the world of science. We asked Jill Yersak, Ph.D., Vice President of Mission Strategy at The ALS Association about her personal experience growing up in the STEM field.
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
Marjio opened her own personal training studio, MOTIVATION STATION, last September. While providing a safe environment for Marjio and her clients, the studio has also provided increased flexibility for her role as caregiver to Terry.
Six months after their wedding, Jonathan began noticing unusual weakness in his right hand which persisted, and then seemed to inexplicably spread into his right leg. Because of his medical education, he suspected ALS.
Back in 2000, when Veronique Belzil was working as a counselor in Canada, she found a new path after watching her husband’s uncle quickly succumb to ALS.
We recently spoke with George Stevens – husband, father, grandfather, and a person living with ALS. George and his family live in Maine and have been very involved with The ALS Association Northern New England Chapter. Here is what George had to say about his journey with ALS in his own words.
Our family’s journey with ALS was no doubt the saddest and hardest thing we ever encountered. But we managed to stay strong through it, and the entire experience brought us all even closer together. In the end, it became the most special and magical journey our family ever had together.
We recently spoke with Kathleen Poirier - wife, mother, and a person living with ALS. Kathleen and her family live in Florida and have been very involved with The ALS Association Florida Chapter. Here is what Kathleen had to say about her family’s journey with ALS in her own words.