March 2024 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

A Full House for the Hope Through Caring Gala

Don’t miss your chance to join the Les Turner ALS Foundation for a night of dinner, dancing, and hope at the Hope Through Caring Gala! Advance ticket sales close on March 27th.

This black-tie optional event is not just a gala—it’s an opportunity to unite with Chicago’s leading minds in ALS research, care, and support, including:

  • Dr. Merit Cudkowicz, a clinician and researcher of remarkable accomplishment, with the Harvey and Bonny Gaffen Advancements in ALS Award
  • Dr. Anne Lidsky, a beloved support group facilitator of more than 40 years, with the Hope Through Caring Award
  • A celebration of Chicago Bears legend and ALS champion Steve McMichael’s induction into the Hall of Fame, with hit family and Bears teammates on hand

There’s only one week left to secure your tickets and ensure your spot at one of the city’s most prestigious events. Whether you’re joining in person or virtually, it’s a celebration of hope and community you won’t want to miss. Remember to add a touch of blue to your attire!

Advocacy for Congressional Funding for ALS

The Les Turner ALS Foundation is collaborating with other leading organizations to ask Congress to support research and access to clinical trials for the ALS community.

The letter, which was delivered to leaders in the U.S. Senate and House of Representatives, specifically calls for increased funding across the ALS research ecosystem, emphasizing the critical need for the full funding of the Accelerating Access to Critical Therapies (ACT) for ALS Act, alongside bolstered support for the Department of Defense’s ALS research program, the National Institutes of Health, ARPA-H, and the Centers for Disease Control.

This initiative underscores the Foundation’s steadfast commitment to advancing crucial legislation that promises to make a profound difference in the lives of individuals and families navigating the challenges of ALS. Read the letter.


Fill Your Bracket for a Great Cause!

Join the fun with the Young ProfessionALS Group’s NCAA Bracket Challenge for Charity and stand a chance to win big while supporting the ALS community! Purchase up to three brackets and make your selections by March 21st, before the tournament’s first tip-off.

With a first-place prize of $500, second place taking $200, and third place winning $50, there’s everything to play for.

Get your bracket, join in the madness, and help make a difference. Purchase your bracket today and be part of a winning team fighting against ALS!

We Had a Blast Watching the Chicago Wolves for ALS Awareness Day

What an incredible day we had for the Chicago Wolves’ ALS Awareness Day on March 10th! Our heartfelt thanks go out to everyone who joined us for an afternoon filled with hockey, hope, and community spirit as the Chicago Wolves emerged victorious over the Milwaukee Admirals. It was a day to remember, not just for the thrilling game, but for the strong sense of unity and support it fostered among all of us connected to the ALS cause.

For those who were there and those who couldn’t make it, we invite you to relive the excitement and see the moments of joy and solidarity captured throughout the day. Head over to our Flickr page to browse through all the photos taken at the event.

Relyvrio Clinical Trial Results Announced

Amylyx Pharmaceuticals has announced that Relyvrio was not successful in its Phase 3 large global clinical trial. Like many in the ALS community, we are deeply saddened by this news. The trial data found that Relyvrio did not work better than a placebo, although it was generally well-tolerated by those who took it. Amylyx is considering withdrawing Relyvrio, also known as AMX0035, from the market.

We understand that this is incredibly hard news to hear for the ALS community. We expect to learn more in the coming weeks. If you are currently taking Relyvrio, please do not stop without consulting your physician or research study team.

What’s worth celebrating is that a treatment for ALS did receive a Phase 3 clinical trial. That has been all too rare for ALS. For a treatment to reach this point, there had to be scientific research, funding, regulatory support, and most importantly, a dedicated community of clinicians and clinical trial participants behind it. We’re proud to have been part of those trials, and grateful to those who made it possible. Read more.