Foundation News
The 2022 ALS Walk for Life was a success because of you!
The 21st annual ALS Walk for Life was a huge success. And we have the photos – and figures – to prove it.
We loved seeing so many of you again this year, as well as meeting lots of new faces. Visit our Flickr page to find your individual and team photos from the Walk.
This year we had thousands who joined us in person representing 153 teams who raised over $500,000 and counting! We can’t thank you enough for your fundraising efforts to advance ALS research, support, and care.
Fundraising for the ALS Walk for Life continues until the end of the year, so please share your photos and experiences on social media to encourage your friends and family to continue donating.
FDA Approves AMX0035 (RELYVRIOTM) for Treatment of ALS
We applaud the FDA’s decision to approve Amylyx Pharmaceuticals’ therapeutic compound AMX0035 for treatment of ALS. AMX0035, now known as RELYVRIO™, addresses an urgent and unmet medical need, and is safe and effective for treatment of ALS.
Foundation CEO Andrea Pauls Backman, Dr. Colin Franz of the Les Turner ALS Center at Northwestern Medicine, and Leslie Bartosz, a person living with ALS, appeared on NBC5 Chicago to discuss the FDA’s approval.
To learn more about how you can obtain RELYVRIO, register for an educational webinar held by Amylyx on either Tuesday, Oct. 11 at 2:00 p.m. CST or Tuesday, Oct. 18 at 5:00 p.m. CST. Register for webinar.
Webinar: Navigating the Challenges of Caregiving for People Living with ALS
Caregivers undergo changing dynamics and burnout when caring for a loved one. It’s important for others to maintain a more understanding and loving perspective so that they can cope effectively.
Please join us this Thursday, Oct. 6 from 12-1 p.m. CST for our next webinar in the ALS Learning Series, “Navigating the Challenges of Caregiving for People Living with ALS.” Anne Lidsky, PhD, Foundation Support Group Facilitator, will discuss healthy and helpful coping skills that are so important while living with the challenges of ALS. She will talk about the changing needs of caregivers and people with ALS as the disease progresses. 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 Mitsubishi Tanabe Pharma America and Cytokinetics for sponsoring this webinar.
Submissions for Celebration of Life due Oct. 7
The Celebration of Life is an annual program dedicated to the people we lost to ALS over the last year, and also to their grieving friends and family members. Submit photos and names of your loved ones by October 7 to be included.
Foundation Support Group Facilitator Anne Lidsky, PhD, will lead this moving tribute, accompanied by Cantor Adam Kahan, who lost his father, Barry, to ALS.
“We pay tribute to all of you who did your very best to bring sunshine into a world that was often so challenging,” says Dr. Lidsky. “May our lives always bring honor to our loved one’s memory, as they would want, may we go from strength to renewed strength.”
The memorial service will be held on Saturday, Oct. 22 from 11 – 11:30 a.m. on Facebook Live.
Donor Spotlight: Foglia Family Foundation
As a lifelong baseball fan, Vince Foglia knew about ALS after having heard Lou Gehrig’s famous speech, but he never personally knew anyone who had the disease. Then, suddenly, the disease came into focus: first through a friend, then a researcher at the Les Turner ALS Center, and then one of Vince’s employees.
Now, through the Foglia Family Foundation, Vince, his wife Pat, and their two children are one of the Les Turner ALS Foundation’s most generous and loyal donors.
“When I was first introduced to the Les Turner ALS Foundation, I got to see firsthand what the people at the Foundation do for people living with ALS and I was so impressed,” says Vince. “And I thought, this is a cause that I could get involved in.”
Read more about the people who inspired the Foglia Family Foundation’s commitment – and why Vince considers this a special organization.
