May 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

ALS Awareness Month: Take action!

May is ALS Awareness Month, a terrific opportunity to share your commitment to ALS care and research with friends and colleagues. All month, we’ll be sharing ideas to help you make an impact and highlighting people doing amazing work to raise funds and awareness in their communities.

Can you commit to at least one action for ALS Awareness Month? Some of the options 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.

Time and again, people find that ALS is not actually a rare disease — it affects all of us. If you take just one of these actions for ALS Awareness Month, you’ll discover bonds and shared experiences with friends and colleagues, and you’ll help connect people living with ALS and their families with care and support that can make a huge difference for them.


Illinois proclaims ALS Awareness Month, recognizes Les Turner ALS Foundation

Gov. J.B. Pritzker has proclaimed May as ALS Awareness Month in the State of Illinois, recognizing the comprehensive care and support that the Les Turner ALS Foundation provides for people living with ALS and their families and the Foundation’s work to advance scientific research for the prevention, treatment, and cure of ALS.

The full proclamation can be downloaded as a PDF or read on our website.


ALS Awareness Month: Double Your Impact

ALS Awareness Month is about inspiring others to share your commitment to ALS care and research. Did you know that your donation could be doubled or tripled within just a few minutes? Our easy-to-use tool will tell you whether your employer participates in matching gifts.

If your employer offers matching contributions, just obtain the necessary paperwork from your human resources department, complete the donor section, and send it to us along with your gift. If you made a gift within the last few months, it can still be matched — contact us and we’ll help.

Between $2-3 billion is given annually through matching gifts. Whether you work for a private company or a public organization, you can double or even triple your impact on the cause that’s close to your heart by having your employer match your charitable contributions.


Thursday: ALS and Exercise 

Would you like to learn more about the clinical practice behind the new My ALS Decision Tool™ on Genetic Testing?

Join us on Thursday, May 11 from 3:00-4:00 p.m. CST for “Evidence-Based Consensus Guidelines for Genetic Counseling and Testing in ALS” with Jennifer Roggenbuck, MS, CGC. Jennifer will talk about how practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a newly FDA-approved gene-targeted therapy in ALS.

Jennifer Roggenbuck is a genetic counselor and an associate professor at The Ohio State University, where she studies genetic testing and counseling outcomes and best practices in ALS clinical genetics.

The Les Turner ALS Foundation is proud to offer the ALS Learning Series at no cost to the ALS community. Thank you to the Gilbert and Robin Fern Foundation and Mitsubishi Tanabe Pharma America for sponsoring this webinar.


Update on Qalsody™ (tofersen) for SOD1-ALS

As the first FDA-approved treatment to target a genetic cause of ALS, tofersen – now known as Qalsody™ – represents a landmark moment for the ALS community.

Study results suggest that reduction of neurofilament levels predicts slower progression of the disease, and that an early start and extended use of Qalsody may help stabilize muscle strength, respiratory function and quality of life.

We are grateful to the people living with SOD1-ALS who participated in the clinical trials for tofersen and their caregivers; to the donors who make it possible for our Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine to offer access to clinical trials such as these; and to Biogen for its commitment to the drug’s development.

NEALS will hold a webinar today (Tuesday, May 2) at 3:00 p.m. CST with updates on this new treatment. Register online to attend.