May 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

ALS Awareness Month: Celebrating nurses

As ALS Awareness Month continues, we’re taking the opportunity to celebrate the nurses who make an enormous difference for people living with ALS. We can’t possibly thank nurses enough for the care they provide.

If you feel the same, will you commit to at least one action for ALS Awareness Month? Some of the ideas below will take less than a minute — and make a world of difference.

  • Share a graphic on social media. On our website, we’ve posted graphics with stats about the disease. Please download and post one with a couple lines about why ALS is personal for you. We’ll be posting more as the month continues.
  • Commit to volunteering for an event this year. Add your name to the volunteer list for an upcoming event, such as the ALS Walk for Life or the Chicago Marathon, or find a rewarding experience with a remote team working year-round like our Gratitude Group.
  • Register an ALS Walk for Life team. Use ALS Awareness Month as an opportunity to recruit friends for your Walk team on Saturday, Sept. 23 at Soldier Field. By registering now, you’ll be able to connect with other teams over the summer — and you’ll turbocharge your fundraising efforts.
  • Hold a fundraiser — or start planning one. Whether it’s cooking, running, golfing or just celebrating a birthday, our Fundraise Your Way program will help you use an occasion of any size to raise money to help people living with ALS, at any time of year.
  • Make a donation — and talk about why you did it. It’s natural to be humble about your generosity, but for ALS Awareness Month, people should know that ALS care and research is a cause that’s important to you. Nothing speaks louder than the example you set.
In the weeks ahead, we’ll share materials you can use to help people living with ALS and their families take control of their own care and celebrate advancements in research. We’re also excited to highlight people doing amazing work to raise funds and awareness in their communities.

By taking just a minute to participate in ALS Awareness Month, you can help advance ALS care and research, make someone feel recognized and supported, or help someone affected by ALS feel less alone.

 Lois Insolia ALS Clinic opens enrollment for new HEALEY ALS Platform Trial Regimen

The Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine is now an active site for Regimen F of the HEALEY ALS Platform Trial. The focus of Regimen F is ABBV-CLS-7262, an investigational product being developed by Calico Life Sciences LLC in collaboration with AbbVie, which aims to restore function in cells affected by ALS by normalizing protein production.

“Launching enrollment for this novel investigational product provides further hope towards discovering treatments for people living with ALS,” says Senda Ajroud-Driss, MD, Associate Professor of Neurology and Director of the Lois Insolia ALS Clinic at Northwestern University Feinberg School of Medicine.

>Dr. Ajroud-Driss will serve as national co-principal investigator for this study, showcasing the clinic’s position as a leader in providing access to clinical trials for people living with ALS. With Regimen F, a phase 2/3 trial, investigators are seeking to enroll approximately 240 participants nationally.

New information guide: ALS & Genetics

All people living with ALS, regardless of clinical presentation or family history, should have the option of genetic counseling and genetic testing. At the Les Turner ALS Foundation, we’re committed to providing education and filling gaps in the available literature on this important subject.

The new ALS & Genetics information guide is designed to explain the basics of genetic testing: how genetic testing works, what you can learn from the results, how to talk to your family, and more.

Whether you’ve explored the new My ALS Decision Tool™ on Genetic Testing for People Living with ALS or just need a reference on the subject, this guide will help you understand the essentials and make an informed decision about whether genetic testing is right for you.

 ALS Awareness Month: Sustainers for Hope


ALS Awareness Month is the perfect occasion to make a commitment to a cause that’s important to you — and wake up every day knowing you’ve made a difference.

As a member of the Sustainers for Hope, your monthly donation will help individuals and families cope with the daily struggles of ALS, supporting every aspect of our mission: ALS education, support, care and research. And you’ll be joining a passionate community of monthly donors dedicated to improving the lives of those with ALS and their loved ones, like Mary Roemer.

“The Les Turner ALS Foundation was our family’s lifeline during my husband’s five-year journey with ALS,” says Mary. “The Foundation staff was there for us whenever we needed direction and resources, month after month. Because Dave often asked for ALS research updates, I enrolled in the Foundation’s monthly giving program to honor his memory and help ensure the research and compassionate care continue for people living with ALS.”

If you’d like to stand with donors like Mary and honor the memory of a loved one, please consider becoming a Sustainer for Hope

 Last call for Lew Blond 5K Run/Walk

Whether you are an avid runner or just excited to get outdoors and enjoy the beautiful weather, we’d love to see you at the Lew Blond Memorial 5K Run/Walk this weekend in Northbrook, IL. There are tons of activities for all age levels including the Little Lew 50-yard dash for children up to 6 years old.

During registration, if you select ‘Les Turner ALS Foundation’ in the “How did you hear about the Lew Blond Run?” drop-down, the full proceeds from your registration will be donated to the Foundation for ALS care and research. With our own Strike Out ALS 5K on hiatus for 2023, 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.

Sign up today or plan to register on-site, and we’ll see you on Saturday!