The ALS Association recently hosted an COVID-19 update webinar for the ALS community, with panelists Dr. Lou Libby, Dr. Richard Bedlack, Dr. Cherise Rohr-Allegrini, Dr. Urvi Desai and Dr. Marinella Galea, moderated by ALS Association Board of Trustees member Dr. Ken Menkhaus, addressing issues specific to the concerns and interests of the ALS community.
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.
The ALS Disability Insurance Access Act went into law Tuesday, removing the 5-month delay for people with ALS to access the Social Security Disability benefits. This marks the culmination of a multi-year fight by ALS advocates across the country.
The Food and Drug Administration on Friday approved emergency authorization of a COVID-19 vaccine developed by Moderna, the second vaccine approved by the agency to combat the coronavirus pandemic.
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 Hugh O’Brien – husband, father, grandfather, and a person living with ALS. Hugh and his family live in Pennsylvania and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Hugh had to say about his journey with ALS in his own words.
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.
Like many family caregivers, Linda juggles caregiving and her career. According to the National Alliance for Caregiving, 61 percent of family caregivers continue to work.
Often ALS takes away a person’s ability to swallow safely, and if so maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.
We recently spoke with Amber Letters - daughter, wife, mother, and part time caregiver of a person living with ALS. Amber and her family live in Pittsburgh and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Amber had to say about her family’s journey with ALS in her own words.
I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.
Navigating the world of health care, insurance, and especially Medicare, can be very complicated and overwhelming. Making the right decisions when it comes to healthcare and understanding all of your options is critical for everyone, but even more so for people living with ALS.
We can’t wait for this pandemic to be over to continue serving and supporting our communities. Here are 7 things you can do right now to support people living with ALS.
Before his diagnosis, John Russo had two fears: the first was getting attacked by a shark while fishing at night, and the second was being diagnosed with ALS. He managed to avoid the sharks, but not ALS. After taking a few weeks to process what the rest of his life would look like, he realized he needed to face down his biggest fear and keep going. He found a new purpose: making life better for people living with ALS across the country, as well as deepening research efforts to learn more about the disease.
