July 2024 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Supercharge your Walk team fundraising!

We want to share why you walk — and if you tell us, you could win $500 toward your team fundraising! The first 10 people to email us a video will receive an extra donation for their team’s fundraising total thanks to the generosity of the Haarlow Family Charitable Foundation.

In your video, please:

  • Mention your name, your team name, and how many years you’ve participated in the walk.
  • Talk about why you participate in the Les Turner ALS Walk for Life and one of your favorite parts about Walk day.

Video tips:

  • Hold your phone vertically when recording.
  • Record in a quiet place with bright lighting.
  • Make sure you are not backlit.
  • Keep your answers short and sweet! Your video should aim to be 1-3 minutes long.
  • Your video may be shared on Les Turner ALS Foundation social media channels.

Email your video by July 17th. Let’s come together to share our stories and inspire others. Every story brings us one step closer to a world free of ALS!

Explore what’s available in our grant programs

The Les Turner ALS Foundation offers a variety of grant programs to support people living with ALS and their families. These grants provide financial assistance for essential equipment and home modifications not covered by insurance, short-term respite care for primary caregivers, accessible technology to aid communication and environmental control, and transportation to and from the Lois Insolia ALS Clinic at Northwestern Medicine.

These programs are designed to alleviate financial burdens and improve the quality of life for those affected by ALS. Grants are available to those demonstrating financial need and receiving care at the Lois Insolia ALS Clinic. Learn more about them, and how to apply.

Save the date for the Les Turner Symposium on ALS

Speakers at the 2023 ALS Symposium

Mark your calendars for Monday, Nov, 4, as the Les Turner Symposium on ALS returns to Chicago for its 14th year! Join us virtually or in person at Northwestern’s Feinberg Pavilion to engage with leading ALS researchers, clinicians, advocates, and those living with ALS.

This symposium is a unique opportunity to explore the latest research and advancements in ALS care, ask questions, and share insights. Keynote speaker Dr. Angela Genge will discuss therapeutic innovations in ALS treatment.

Don’t miss this chance to connect with the ALS community and learn about the future of ALS treatment. More information.

Our NASCAR Watch Party is happening this weekend!

Join us this Saturday, July 6, from 4:00 – 7:00 p.m. at Mother Hubbard’s Sports Pub for an exhilarating NASCAR in Chicago Watch Party. Hosted by Gordon Scully, an IMSA Michelin Pilot Challenge GT4 driver, in partnership with the Les Turner ALS Foundation’s Young ProfessionALS Group, it promises to be an unforgettable evening of motorsport entertainment.

Enjoy expert commentary from Gordon Scully while indulging in an open bar (beer, wine, and well drinks) and a delicious buffet. All proceeds from the event will benefit the Les Turner ALS Foundation, supporting our mission to improve the lives of those affected by ALS.

Don’t miss this opportunity to join the fun and contribute to a great cause. Secure your tickets now.

New guide on participation in clinical research

Last month, we launched a new guide on ALS & Participation in Clinical Research, available in both English and Spanish. This comprehensive guide empowers people living with ALS and their families to make informed decisions about clinical trials and research studies.

We are proud to announce that this guide is now being used as part of care for veterans, who are at twice the risk of developing ALS compared to those who haven’t served in the military. “This guide is now a part of the training for Veteran Administration ALS Coordinators across the country,” says Shelly Hover, a veteran living with ALS.

Developed in partnership with NEALS, the guide aims to make clinical trials more accessible and inclusive. It provides clear descriptions of clinical trial phases, types of studies, and participant rights and expectations. Insights from healthcare professionals and real-life experiences from people living with ALS offer a broad overview of the clinical research landscape.

By increasing enrollment and diversity in clinical studies, we enrich the research process, aiding in the development of more effective treatments and ultimately, moving closer toward a world free from ALS. Read the guide.