June 2024 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Time to Get Your Team Ready for the Les Turner ALS Walk for Life!

WFL Shirt and Bubbles finish Line

We are thrilled to invite you to the 23rd Annual Les Turner ALS Walk for Life, the largest ALS gathering in the Midwest! Set for Saturday, Sept. 14, this cherished event assembles thousands of participants including individuals, families, and teams united by a shared mission to honor those living with ALS and remember loved ones we have lost to the disease.

“This is a great event, there’s a DJ and things for kids to do. The location is great and helps bring out a crowd. I love the walk and the March of Faces. I got my dad on there the first year and we enjoy finding him there every year,” shares Alyssa Poniatowski from George’s Generals Walk Team, whose father George passed from ALS in 2019.

Together, we form a powerful force committed to achieving a world free from ALS. This year, we gather for a scenic two-mile walk along Chicago’s beautiful lakefront — Come on out for a day of food, fun, and community!

By joining the Les Turner ALS Walk for Life, you play a vital role in our efforts to provide comprehensive care and support to those affected by ALS. Every step you take and every dollar you raise help propel forward critical research aimed at finding treatments and a cure for ALS, and empower individuals to manage the challenges of this disease with strength and dignity. Reserve your spot (or your team’s) at the walk.

Honor your Loved One in the March of Faces

Celebrate the bravery and resilience of those affected by ALS by featuring a loved one on this year’s March of Faces banner. Displayed outside Soldier Field during the Les Turner ALS Walk for Life and other events, these banners form a moving tribute, tracing back to 2003 and inspired by Kyle Hahn’s vision before his passing in 1997.

This ongoing display serves as a powerful advocacy and awareness tool, honoring both past and present individuals who have battled ALS.

There is no cost to participate in the March of Faces, though donations are gratefully accepted to advance our mission. The deadline to submit is August 14. 

FAA Reauthorization Act Transforms Accessible Air Travel

We’re celebrating a landmark achievement in accessible air travel with the recent passage of the FAA Reauthorization Act of 2024.

Matt Creen, who is living with ALS, lauded the bill’s provisions, “it’s very important that this year’s FAA reauthorization bill included the most comprehensive update to accessible air travel requirements in the past 40 years.”

Among other things, this legislation mandates improved training for airline personnel responsible for assisting disabled travelers and handling mobility devices. These enhancements in training and policy are designed to make air travel more accessible, especially for those who rely on mobility aids, by promoting safer and more respectful handling of personal equipment and enhancing the overall travel experience for passengers with disabilities.

We’ll continue to push for further advancements that will allow travelers to remain in their wheelchairs during flights, mirroring the accessibility found in ground transportation. Learn more about how this legislation impacts our community and how you can support ongoing advocacy efforts.

Join Us and Gordon Scully for a NASCAR Watch Party!

Join us on Saturday, July 6, from 4:00 – 7:00 p.m. at Mother Hubbard’s Sports Pub for a thrilling NASCAR in Chicago Watch Party. Hosted by IMSA Michelin Pilot Challenge GT4 driver Gordon Scully in association with the Les Turner ALS Foundation’s Young ProfessionALS Group, this event promises a thrilling evening of motorsports fun.

Enjoy professional insights from Gordon, an open bar (beer, wine, and well drinks), and a delicious food buffet. All proceeds will directly benefit the Les Turner ALS Foundation, helping to make a difference in the lives of those affected by ALS. Don’t miss out on the action and the opportunity to support a vital cause. Grab your tickets now.

Serve Your Community on the Support Services Committee

Are you passionate about ensuring that the needs of people living with ALS are amplified within the Les Turner ALS Foundation? We are looking for people living with ALS, caregivers, or family members to join the Support Services Committee of our Board of Directors.

Support Services Committee members are expected to be passionate advocates, eager communicators of the Foundation’s mission and vision, and committed to high quality, patient-centric and innovative support services. Members attend three meetings per year, which are held virtually.

The committee is currently comprised of board members and non-board members. The Foundation relies on committee members to ensure that our services are truly responsive to the needs, priorities, goals and values of the ALS community.

If you’re interested in submitting an application, the qualifications are as follows:

  • Person living with ALS or caregiver/family member affected by ALS
  • Interest in advocacy, outreach, support, and/or education
  • Ability to initiate and respond to questions and participate in group discussions
  • Ability to bring your personal and the community’s perspective to the Support Services Committee
  • Willingness to bring a sense of urgency to amplify ALS community needs
  • A person who has utilized Foundation’s Support Services