October 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

 A Day of Hope and Celebration in Pictures

That’s a wrap on the 22nd annual ALS Walk for Life, and it was a huge hit. You not only raised funds for care, advocacy, and research – you looked great doing it!

Over 2,000 people and 171 teams came out to help raise funds that provide care for people living with ALS & their families, advance advocacy, and fund research.

We’ve uploaded all of the pictures to our Walk album. Check it out, download your favorites, and share them on social media to celebrate your fundraising success!

Join Us for the Les Turner Symposium on ALS

The Les Turner Symposium on ALS is right around the corner, taking place both virtually and in-person at Northwestern Memorial Hospital in Chicago on Monday, Nov. 6. This event promises to be an enriching experience for all in attendance.

Our symposium boasts an impressive lineup featuring presentations by leading ALS scientists, dedicated clinicians, and inspiring individuals living with ALS. Dive into groundbreaking research, explore informative research posters, participate in engaging Q&A panels, and so much more. It’s all free and open to the public, made possible by our generous sponsors who share our commitment to the ALS community.

The keynote presentation by C. Frank Bennet, PhD, Ionis Pharmaceuticals, will cover the use of antisense therapy to treat neurological diseases. Antisense technology is essentially a clever way to work with our body’s genetic instructions, which are like recipes for how our bodies work. Antisense technology can change these instructions to help treat diseases like ALS.

Secure your spot today by clicking the link to register. Let’s come together to exchange ideas and advance scientific progress in ALS research.

 Submit your Loved One’s Name for our Day of Remembrance

We invite you to share your loved one’s name for inclusion in our annual Celebration of Life. The submission deadline is October 16.

Led by Dr. Anne Lidsky, a dedicated Support Group Facilitator, this event promises to be a poignant tribute.

Event Details:
Saturday, Nov. 18

11:00 – 11:30 a.m.

Online via Facebook Watch (Recording available for later viewing)

Together, we remember, honor, and draw strength from our shared community. We sincerely hope you’ll join us for this touching tribute.

ALS Better Care Act Introduced in U.S. House

The ALS Better Care Act could significantly impact individuals and families affected by ALS. Multidisciplinary ALS care at centers like the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine has been shown to extending survival and improve quality of life for people living with ALS.

Dr. Senda Ajroud-Driss, Director of the Lois Insolia ALS Clinic, emphasizes, “There is really no way neurologists can take care of an ALS patient by themselves. People living with ALS require the expertise of so many professionals working together to address all the facets of this disease.”

The Les Turner ALS Foundation is proud to endorse this legislation alongside The ALS Association, I AM ALS, The ALS Hope Foundation, American Academy of Neurology, and the Muscular Dystrophy Association.


 ALS Learning Series: Ethical Principles + Informed Consent in ALS Research

Ever wondered why informed consent is vital in research?

Join us Thursday, Oct 26 from 12:00 – 1:00 p.m. CDT for our ALS Learning Series, featuring Emma Schmidt, Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine. She will delve into the history and significance of informed consent, demystify the process, outline your rights as a research participant, and equip you with insightful questions to ask if you’re considering research participation.

We’re proud to provide this invaluable webinar to the ALS community, free of charge, thanks to the generous sponsorship of the Gilbert & Jacqueline Fern Foundation, Mitsubishi Tanabe Pharma America, and Biogen.

Emma Schmidt serves as the Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine. Join us for this enlightening session on informed consent in research – knowledge is empowerment.