Foundation News
Tune in tomorrow: FDA meeting on tofersen
The U.S. Food and Drug Administration (FDA) will hold an advisory committee meeting on Wednesday, March 22 to review Biogen’s New Drug Application for accelerated approval of tofersen, a treatment for SOD1-ALS. The Foundation has submitted written comments in favor of approval. On Wednesday, the committee will hear oral testimony, which you can watch online.
Lauren Webb, LCSW, Chief Advocacy and Outreach Officer, will speak on behalf of the Foundation. Also providing testimony will be Senda Ajroud-Driss, MD, Director of the Lois Insolia ALS Clinic at Northwestern Medicine and a site investigator for the tofersen trial, and Jessica Morris, who is living with SOD1-ALS.
The advisory committee meeting will take place from 8:15 a.m. to 5:00 p.m. CST. The open public hearing will occur from 1:10 – 2:40 p.m. CST. Committee discussion will follow the conclusion of the open public hearing. The full agenda and materials can be found here.
Welcome to our incoming CEO, Laura Freveletti
We’re excited to announce that Laura Freveletti has been appointed Chief Executive Officer of the Les Turner ALS Foundation, effective April 10. Laura succeeds Andrea Pauls Backman, who will step down after eight years of service as CEO.
“I am deeply inspired by the courage and resilience of those living with ALS,” said Laura. “And I am committed to working tirelessly to advance research and improve care for this community. We have made tremendous progress in understanding the disease, and I believe that with continued collaboration and innovation, we will find a cure for ALS.”
Laura brings 30 years of experience in executive leadership, most recently as senior program officer at The Allstate Foundation, where she led strategic development and implementation of a $28 million national grantmaking portfolio. She has deep connections to the Chicago non-profit community, and brings a personal understanding of the impact of ALS to the position.
ALS Walk for Life registration opens today!
Registration for this year’s ALS Walk for Life is open! Come out and be a part of a community which brings together thousands of people, each with their own amazing ALS story, like Ashley Leakey who is walking for the first time this year in honor of her grandpa.
We lost my grandpa, ‘Pa Dale’ Leakey, to ALS in 1991. I was so little at the time; it was hard for me to realize what was happening. It was so tough to see this strong as an ox, 6’3″, larger than life individual suffer through this awful disease,” says Ashley. “I wish I would have had more time to make more memories with him. I’m walking not only in memory of my awesome grandpa, but also for everyone today who is battling this disease. May we one day find a cure.”
Pack your walking shoes and show your support for the ALS community by joining Ashley and the many others who will be walking for their loved ones at Soldier Field on Sept. 23. Let’s cross that finish line together!
Foundation contributes to new clinical practice guidelines
The American College of Chest Physicians has released a new clinical practice guideline on respiratory management of patients with neuromuscular weakness. Published in the journal CHEST, the guideline contains 15 evidence-based recommendations, including mouthpiece ventilation, transition to home mechanical ventilation, salivary secretion management and airway clearance therapies.
Andrea Pauls Backman, CEO of the Les Turner ALS Foundation, contributed to the development of these guidelines, providing insights into the perspectives of people living with ALS. Lisa F. Wolfe, MD, pulmonologist at the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine and a pioneer in the field of ALS respiratory care, is one of the authors of the guidelines.
Through these evidence-based recommendations, we hope to help standardize and improve the respiratory care provided to people living with neuromuscular diseases, including ALS, across the country.
Running with a purpose
Lace up your running shoes! Whether you are an avid runner or just looking to get some steps in, we’d love to see you at the 22nd annual Lew Blond Memorial 5K Run/Walk on May 20 in Northbrook, IL. This event honors former Northbrook/Glenview School District 30 teacher Lew Blond, who passed away from ALS in 2000.
A portion of the proceeds from this event will go to the Les Turner ALS Foundation in Lew’s memory. There are tons of activities for all age levels including the Little Lew 50-yard dash for children up to 6 years old. The Lew Blond 5K is a great chance for people of all ability levels to get some exercise, enjoy the sun and support ALS care and research.
