Foundation News
Register for NINDS ALS Strategic Planning Workshop
Tomorrow, the draft of the National Institute of Neurological Disorders and Stroke (NINDS) ALS Strategic Plan, is being made available to the public. The Les Turner ALS Foundation has been an active participant for the last several months helping to craft this plan. We invite you to attend a public workshop to present and answer questions about the draft of the ALS strategic plan on Oct 26 and 27. The draft plan will be available for review tomorrow, Oct. 19 on the website.
“The NIH/NINDS ALS Strategic Plan is the first time people living with ALS, caregivers, researchers, clinicians, and advocates have joined forces with the power of the NIH to change the trajectory of ALS research and care,” says Foundation CEO Andrea Pauls Backman. “As an advocate and former caregiver, I’ve been honored to be a part of the committee working on this plan over the last several months and now, the draft plan needs your voice to ensure your needs are heard before the plan is finalized. We encourage you to enter your questions to the Steering Committee here.»
Register for the workshop and help the Foundation shape this important initiative that will impact the lives of people living with ALS now and well into the future.
Betting for a cure at ALL in for ALS Casino Night
Join us at this year’s 16th annual All in for ALS Casino Night event hosted by the Les Turner ALS Foundation’s Young ProfessionALS Group (YPG) on Saturday, Nov. 12 from 7:00 – 11:00 p.m. at the elegant East Bank Club in Chicago.
At the All in for ALS Casino Night, you’ll enjoy gaming favorites like blackjack, roulette, and craps. Not much of a gambler? Bid on amazing auction items, while enjoying appetizers and refreshments. Admission includes drinks and hors d’oeuvres, with VIP packages to take your luck – and your support of the ALS community – to new heights.
Register now and save with early bird rates by Oct. 21!
Find Answers at the Les Turner Symposium on ALS on Nov. 7
One of the things that makes the Les Turner Symposium on ALS unique is the opportunity to engage with leading ALS clinicians and researchers from across the country.
Join us in the morning on Monday, Nov. 7 for a series of ALS research presentations with opening remarks by Frank Granata, a person living with ALS. Then, at the afternoon Clinical Conversations panel you’ll be able to get your questions answered by a panel of clinicians and advocates.
«The Les Turner ALS Symposium is a rare opportunity for patients, health care teams, researchers and other stakeholders to get together, share ideas and learn about the latest advances in ALS,» said Colin Franz, MD, PhD, the panel’s moderator. «In recent years we have heard from some world leaders in ALS clinical care and research, including early insights into the latest clinical trials and emerging ALS treatments. For example, we heard about the promising effects of AMX0035 (Relyvrio™) at this symposium well before this drug was approved by the FDA.»
The symposium is free and open to the public, but registration is required. For those who can’t join us in person, the symposium will be livestreamed.
My ALS Decision Tool™ in the spotlight at NEALS conference
Anne Marie Doyle, MA, CCC-SLP, the Foundation’s Community Education Manager, will present her poster, “My ALS Decision Tool™: An Interactive, Online Tool to Aid in Informed Decision Making” at the 2022 NEALS Meeting, Nov. 1-3 in Florida.
“I’m excited to be able to share the My ALS Decision Tool™ with a large audience of researchers and practitioners in the ALS community,» says Anne Marie. »We know people living with ALS must make critical decisions regarding their health, and it can be overwhelming. By increasing our exposure of the tool, a first of its kind in the U.S., we hope that people living with ALS will feel more confident in their decision making and empowered to talk about their ALS treatment options with their ALS care team.”
Anne Marie’s abstract on the subject will also appear in an upcoming issue of the academic journal, Muscle and Nerve.
Explore the My ALS Decision Tool ™ and our helpful ALS guides so that you can take charge of your health and make important decisions about your future care. No matter where you are in your ALS journey, it’s never too early to start planning ahead.
Bravo to the Team Race for ALS at the Chicago Marathon!
Congratulations to all 32 Team Race for ALS runners who crossed that Bank of America Chicago Marathon finish line and have raised nearly $75,000 as of today! A special shout out goes to our top fundraiser, Stuart McNair, who has raised over $9,000 in honor of his mom who is living with ALS.
“My father passed away from ALS and the Les Turner ALS Foundation helped us during the time of his illness,” says first-time runner Victor Keane. “In his lifetime he ran 11 marathons, 6 of them being the Chicago Marathon. To be able to accomplish my first one, by running for the foundation that helped him and my family, really drove me to continue through my training and reach this accomplishment.”
Interested in running for ALS? We have spots open for the 2023 marathon! Contact Kim at events@es.lesturnerals.org and be a part of Team Race for ALS.
