Foundation News
FDA Advisory Committee meeting on tofersen, an SOD1-ALS treatment set for March 22
The U.S. Food and Drug Administration (FDA) will hold an advisory committee meeting on March 22 to review Biogen’s New Drug Application (NDA) for accelerated approval of tofersen. In clinical trials at sites including the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine, tofersen has shown success in treating SOD1-ALS. If approved by the FDA, tofersen would be the first treatment to target a genetic cause of ALS.
“I’m a 35-year-old mom of three children,” says Jessica Morris, who is living with SOD1-ALS. “My father died of ALS when I was six years old. Getting ALS has been something I have feared my whole life. When I was diagnosed, one of the first things my doctor at the Les Turner ALS Center at Northwestern Medicine told me was, ‘This is not your dad’s ALS.’ She was right.
“Now in 2023 we are making progress in slowing and hopefully one day stopping this ugly disease. I have been taking tofersen for several months and I am so grateful for the opportunity to have a chance to slow my progression. It’s not often that an ALS patient has hope and that’s exactly what tofersen represents to me —hope!”
The Les Turner ALS Foundation has filed a public comment in favor of approval and will provide oral testimony at the advisory committee meeting, as will Jessica. Please mark your calendar for March 22 to watch the testimony online. The open public hearing will commence at approximately 2:10 p.m. ET; the actual time could be anywhere between 1:50 p.m. ET or as late as 2:40 p.m. ET. Committee discussion will follow the conclusion of the open public hearing. The agenda and watch information will be posted a few days before the hearing.
Let the Madness begin!
Cinderella stories are in the air! It’s time for the 2023 NCAA March Madness Bracket Challenge, hosted by the Foundation’s Young ProfessionALS Group (YPG). Buy up to three brackets, cheer on your favorite team and compete against your friends, all while supporting a great cause. Participants will have a chance to win cash prizes of up to $500 for the top three finishers.
All brackets are provided by CBS Sports. Once you’ve purchased a bracket, you will get an email with a link to join the Les Turner Group. Brackets will go live on March 12, Selection Sunday, and you will have until March 16 to finalize your selections. Winners will be announced after the national championship on April 3.
YPG will also be hosting a kickoff party at 6:30 p.m. on March 9 at The Pony Inn. There will be free pizza for everyone who attends and buys a bracket. All are welcome to join and get to know the members of YPG. Good luck and may that One Shining Moment be yours!
Purchase brackets here.
Welcome new Support Services Committee members
Members of the Foundation’s Support Services Committee are committed to high quality, innovative support services. They ensure that our services are responsive to the needs, priorities and values of the ALS community.
We’re happy to welcome several new members to the committee: Doug Butchart, Tina Cascio and Matt Creen (above, top left to right), and Chaunelle Caver-Perkins, Frank Granata, Elizabeth Kennedy and James Thompson (above, bottom left to right). Tina, Chaunelle, Matt, Frank and James offer first-hand perspective of living with ALS, joining Cheryl Gallagher who has been on the committee for several years.
“Each person’s journey is unique, and the support they need requires a diverse approach. Our superbly trained team has developed highly effective techniques to meet their needs,” says Frank, who is also a member of the Foundation’s Board of Directors. “I joined the committee to help in driving the team’s momentum and the continuing evolution of our support services.”
Run with Team Race for ALS
We still have some spots open to run on Team Race for ALS – but they are filling up quickly! Members of this amazing team run in honor of people living with ALS or in memory of those who have passed.
“I am running for Team Race for ALS in memory of my father. He was diagnosed with bulbar-onset ALS in early January 2022 and lost his battle in September 2022,” says William. “I first ran for Team Race for ALS in 2022 while he was battling ALS. Even though I knew there was nothing I could do, this felt like it was something.”
Whether you’re a seasoned runner or a novice, register now and get ready to set a personal best (PR) while running for an ALS cure.
Caring for yourself
Taking care of a loved one living with ALS can be physically and mentally exhausting. It is important for caregivers to take time away to re-energize and avoid burnout, but often it is not financially possible.
The Dan Nelson Respite Grant Program offers financial reimbursement to help defray the cost of respite care. Sheila McCullough established this fund in 2012 to honor the memory of her husband Dan Nelson. Grant recipients receive regular support from one of the Foundation’s ALS Support Services Coordinators.
“The Dan Nelson Respite Grant Program has helped me tremendously,” says Carmen Bonilla who was diagnosed with ALS in May 2022. “My dear sister Hilda is my fulltime caregiver. It has helped me in a way to give back to Hilda for all that she does for me on a daily basis. I am very grateful for all the help that the Les Turner ALS Foundation has provided for me. I will forever be grateful.”
