September 2022 Foundation eNews

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Foundation News

ALS Walk for Life, Saturday, September 24!

If this is your first ALS Walk for Life, you’re not alone. Suzanne will be participating in the Walk for the first time – and walking in memory of her husband Michael, who was diagnosed with ALS in 2020 and passed away in 2021.

“Last year was too difficult to walk, we were so angry at the disease,” says Suzanne. “This year when we walk, we will honor Michael. All my family and friends will be walking with me and my son by our side.”

2021 ALS Walk for Life CrowdJoin Suzanne, her friends and family, and thousands of fellow walkers at the ALS Walk for Life at Soldier Field in Chicago on Sept. 24, walking together to honor loved ones who are living with ALS and those who have passed – and raise much-needed funds so that families like Suzanne’s can confidently navigate the disease, and also to advance scientific research for the prevention, treatment, and cure of ALS.

Being together can make a big difference.

“We need to find a cure!” says Suzanne. “ALS is horrible and scary. We are all fractured by the loss of Michael.”

Register today and don’t miss our new fundraising incentives.

 

FDA Advisory Committee Recommends Approval of Amylyx’s AMX0035 

FDAOn Wednesday, September 7, an FDA Advisory Committee voted to recommend in favor of approval for Amylyx Pharmaceuticals’ therapeutic compound, AMX0035. The Les Turner ALS Foundation joined several ALS organizations in supporting approval and provided oral testimony during the hearing

Today is a first step. There is a long walk ahead. We need more treatment options for ALS. But this is a moment to be thankful – to Amylyx, to the clinicians, researchers, and advocates who supported this, and especially to the people with ALS who participated in clinical trials at sites including the Les Turner ALS Center at Northwestern Medicine. Many of them are no longer with us. They made this possible. Today’s outcome is their gift to us.

We urge the FDA to give full approval to AMX0035 when it meets again on Sept. 29. There is no time to waste.

Read our full response.

 

Webinar: Home Automation for People Living with ALS   

With the advancement of technology and home automation systems, tasks that were previously difficult for people living with ALS, such as turning the lights on and off in your home, have become much easier.

Please join us this Thursday, September 15 from 12-1 p.m. (CT) for our next webinar in the ALS Learning Series, “Home Automation for People Living with ALS.” Jeff Powers, program manager at Team Gleason, will discuss what home automation is, provide suggestions on how to implement current available technology, along with ways that Team Gleason can help assist you with the home automation process. 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.

Register

 

Bring Your Questions to the Les Turner Symposium on ALS on November 7.

The 12th Annual Les Turner Symposium on ALS will take place on Monday, November 7, featuring presentations from leading ALS researchers and clinicians, as well as people living with ALS; plus research posters, a Q&A panel and more.

“Induced pluripotent stem cells, derived from blood cells of ALS patients and reprogrammed to become motor neurons and other cells of the spinal cord, show us a window into the causes of ALS. Because these cells come from patients with the disease, they reflect the broad spectrum of genetic backgrounds as well as clinical presentations of ALS. This affords us a great opportunity to learn about what makes ALS patients unique and provides us with insights into how we might design individualized ALS therapies,” said keynote speaker  Nicholas Maragakis, MD of Johns Hopkins University.

The symposium is free and open to the public. It will be held in person at the Les Turner ALS Center at Northwestern Medicine, with opportunities to stream presentations from home. Register today and don’t miss this opportunity to ask questions about the latest advancements in research and care.