Note from the CEO
Next week, the Les Turner ALS Foundation will welcome its new CEO, Laura Freveletti. I’m thrilled for Laura and the Foundation and will work closely with her, our board, staff and our many partners to help orient her over the next couple of months.
Making the decision to leave the Foundation after eight years was not an easy one. I came to the ALS community shortly after I lost my mother Sally to the disease. I have stayed a part of this community because it continues to inspire me every day. And my commitment to work in the ALS community does not end here.
As I hand over the reins to Laura, I thank each one of you for your part in these successes and for your faith in me. What we have accomplished together in eight years is astounding, but we are far from done. It has been an honor and it is my fervent belief that we will solve ALS in our lifetime. And we will do it together. We have no time to waste.
FDA Advisory Committee recommends accelerated approval of tofersen
Biogen presented compelling data suggesting that reductions in neurofilament levels predict slower progression of the disease. We believe that tofersen represents a significant advancement in the treatment of SOD1-ALS, and clinicians, researchers, advocates and people living with ALS agree. We are grateful to the people living with ALS who participated in these clinical trials and their caregivers, and to Biogen, the drug’s sponsor, for its commitment to this important work.
We urge the FDA to act on the committee’s recommendation for approval. The FDA is expected to provide their decision by April 25, 2023.
ALS Awareness Month: Fundraise Your Way
One way to amp up the noise for ALS Awareness Month is by creating your own fundraiser through our Fundraise Your Way program. Fundraising doesn’t have to be complicated – there are plenty of people doing things they love to raise funds for a loved one who is living with ALS or in memory of someone who has passed.
Scott Kummer is a great example of someone who turns his passion into purpose. With support from the Les Turner ALS Foundation, Scott organizes an annual run in memory of his friend and fellow ultra marathoner Alfredo Pedro Perro, who passed away from ALS in 2015.
“Alfredo and I ran 100 miles from Chicago to Milwaukee before his diagnosis,” says Scott. “Every year we remember him by running 100 miles and raising money for ALS. Through our fundraiser we hope to keep Alfredo’s memory alive and raise money towards finding a cure.”
Wondering how to get started with a fundraiser of your own? Reach out and we’ll help!
ALS and Exercise
Do you have questions about whether it is OK to exercise with ALS and what kind of exercise is most beneficial?
Please join us on Thursday, April 20 from 12-1 p.m. CST for this month’s ALS Learning Series webinar, “ALS & Exercise.” Hannah Redd PT, DPT, NCS, at Shirley Ryan AbilityLab, will provide insight into the benefits of exercise among people living with ALS, give examples of appropriate exercises to do at home and discuss signs of overworking. People living with ALS as well as their care teams will receive practical information on home exercise programs and outpatient therapy. A Q&A will follow the presentation.
The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert and Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America for sponsoring this webinar.
ALS and Nutrition
Proper nutrition and hydration are very important for people living with ALS. If you are having trouble eating, drinking, or taking medicine on your own, you may not be able to get all of the nutrition your body needs. This can lead to weight loss, low energy, infections, and other health problems.
The Les Turner ALS Foundation ALS & Nutrition guide discusses the importance of weight maintenance as well as offers guidance on how to recognize signs of dehydration, difficulty swallowing, and choking, as well as what to do when these issues occur. The guide also provides recommendations on helpful tools to make eating and drinking easier for you.
By proactively addressing your nutritional needs and challenges, you will develop greater energy, strength and independence to live your life to the fullest.