July 2024 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Unite in memory and hope with Ryan Bell

Join Ryan Bell in this year’s Les Turner ALS Walk for Life on Saturday, September 14 as he leads a heartfelt tribute to his mother, Lori Hoover, who bravely battled ALS until her passing last June. Ryan walks to honor his mother’s indomitable spirit and works hard to build a strong team that can smash their fundraising goals.

If you want to make a big impact on ALS care and research, Ryan recommends: “Be organized, start early, and reach as many as you can.” He emphasizes use of social media posting and sharing to engage supporters, making sure no opportunity for awareness is missed.

Let’s rally together to support Ryan and all those walking in memory of loved ones. Every step we take brings us closer to a world without ALS. Join us, support our walkers, and spread the word.

ALS Learning Series: Inclusion, Support, and Education in Clinical Research

Join us for our July ALS Learning Series, where we’ll delve into the vital roles of inclusion and education in ALS clinical research. This session will highlight significant initiatives such as the NEALS Clinical Research Learning Institute (CRLI) Research Ambassador Program, Community Education Webinars by NEALS, and the Expanded Access Protocol (EAP) at the Sean M. Healey and AMG Center for ALS at Mass General Hospital.

Hear from experts Judi Carey, Research Access Nurse at MGH, and Allison Bulat, Strategic Advisor for Community Engagement at NEALS and MGH, as they provide insights into advancements in ALS research. This webinar is offered at no cost to the ALS community. Join us to enhance your knowledge of critical ALS research initiatives. Click the link  to register for the webinar:

Spread the word about the Walk with our Social Media Toolkit

We are excited to announce our new Social Media Toolkit designed to help you promote the Les Turner ALS Walk for Life! This toolkit includes images, graphics, and customizable templates for Facebook and Instagram. Participants can share why they walk, honor a loved one living with ALS, or remember those we’ve lost.

By using these resources, you can amplify your support and encourage others to join the cause. Click here to access the social media toolkit and follow the instructions to personalize your posts. Let’s spread awareness and inspire others to participate in this fun, important event.

Together, we can make a difference. Access the toolkit now and start sharing your story!

Meet our newest board member, Joe Roselius

We are thrilled to welcome Joe Roselius as the newest member of the Les Turner ALS Foundation’s Board of Directors. Joe is a partner at DLA Piper in Chicago, concentrating on general commercial litigation with a focus on private equity disputes and bankruptcy litigation. He has a personal connection to ALS; his grandfather was diagnosed with the disease in 1993.

Joe has actively supported the Foundation by attending the Hope through Caring Gala and participating in Young Professionals Group (YPG) gatherings. He lives in Evanston, IL, with his wife and two children. Joe’s dedication and professional expertise will be invaluable to our board and our foundation as we continue our mission to support those affected by ALS. Welcome, Joe!

Have you signed up for the ALS Registry?

The National ALS Registry, established in 2010, plays a crucial role in advancing ALS research. By signing up, people living with ALS can contribute to a better understanding of the disease. The Registry gathers data to estimate new ALS cases, understand who gets ALS, and identify factors affecting the disease. This information enhances research efforts to find the causes of ALS and potential treatments.

Participating in the Registry involves taking risk factor surveys and being counted, which helps researchers identify common risk factors. Your involvement can make a significant difference in finding answers for future generations.

Join the National ALS Registry today and be part of the solution. Learn more at cdc.gov/als.

Together, we can drive progress in ALS research.