Foundation News
Now is the time
When a family is dealing with an ALS diagnosis, children are often more aware of what is going on than parents may realize. They can sense when a family member is stressed, and many times end up absorbing that stress —not knowing how to deal with their feelings of frustration.
Victor was 14 years old when his father was diagnosed with ALS. As a teen, Victor struggled without an outlet for his frustrations about his dad’s ALS. He would talk with his coaches at school, but he knew they couldn’t truly relate.
“As I was coping with my father’s sickness, I found it best to talk to people that I trusted and knew were there for me,” says Victor. “Knowing what I know now, it would have been comforting to talk to someone who has dealt with a similar circumstance of caring for someone with ALS.”
If you’d like to ensure people living with ALS, their families and their caregivers have that kind of support, please make a year-end gift to the Les Turner ALS Foundation – and for a limited time only take advantage of the opportunity to double your impact, as the Willow Springs Charitable Trust and an anonymous donor have generously offered to match all new donations, dollar for dollar, up to $50,000.
Welcome new members of our board of directors
We’re thrilled to welcome two new members to our board of directors. They bring not only their professional experience and skills, but also valuable perspective and leadership, as both are living with ALS.
Diagnosed with ALS in 2021, Frank Granata has remained active following his retirement from his career in international banking, sales, and mortgage services. Frank approaches life with positivity and the desire to help others during their ALS journey. Watch his introductory remarks at the recent Les Turner Symposium on ALS and visit our website to learn more about Frank’s story.
Tina Cascio recently retired from her profession as a home health nurse. She was diagnosed with ALS in December 2020, only two years after her mother passed away from the disease. Tina brings her experience as a caregiver and now as someone living with ALS to our leadership. She is currently involved in Her ALS Story, a group for young women with ALS. Read more about Tina and her ALS journey.
Cheers to a year full of learning
ALS Learning Series webinars cover a variety of topics with helpful information for people affected by ALS. Our goal is to empower the ALS community with the latest information and insights on key topics.
Some of our favorites from the last year were “Making Activities of Daily Living Easier with ALS”, which gave helpful tips and tricks for making activities like bathing, cooking, and cleaning more accessible, and our January webinar on options for mobility aids and tips on home modification. Other valuable topics included information for veterans, a Medicare benefits overview, and advice for caregivers.
Check out our full ALS Learning Series here – and please share! Thanks to Mitsubishi Tanabe Pharma America, Cytokinetics, and the Gilbert and Jacqueline Fern Foundation for sponsoring the ALS Learning Series, and watch for more great webinars in 2023.
Support groups for every stage of the ALS journey– everywhere you go
The Foundation’s reach goes far beyond our local area. Through a wide range of virtual support groups, people and families at every stage of the ALS journey can keep their connection to a supportive community.
“The pandemic forced us to find new ways to reach those we serve without losing the intimate nature of the support we offer,” says Karen Raley Steffens, RN, CHPN, CCM, one of the Foundation’s ALS Support Services Coordinators. “Our virtual visits have allowed for family members out of the area to take part and feel more supported. In addition, virtual support groups have allowed those that would otherwise not be able to attend in person to be a part of these very helpful groups.”
The Foundation’s support groups for people living with ALS and their families allow members to share their personal experiences, while offering emotional comfort and moral support. Visit our support groups page to learn more about groups exclusively for caregivers and groups dedicated to bereavement and moving forward after the loss of a loved one.
Gift guide for people living with ALS
