August 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Team George’s Generals: Join us at the ALS Walk for Life

Team George’s Generals is lining up on Saturday, Sept. 23 for the ALS Walk for Life. Alyssa Poniatowski leads this team in honor of her late father George, who bravely battled ALS until 2019.

The Les Turner ALS Foundation made a significant impact on George’s journey, providing essential resources like a lift and medical equipment. Alyssa emphasizes, “We want to raise funds for research and help people access the care they need.

“The ALS Walk For Life is more than just a fundraiser; it’s a powerful display of community and support. Alyssa appreciates the sense of unity, saying, “Seeing hundreds going through what we’re going through means a lot. It generates a real sense of community.

“With a DJ, kids’ activities, and the moving March of Faces, the event is both fun and meaningful. Alyssa loves finding her father’s picture there every year.
Join Team George’s Generals and their fellow walkers at Soldier Field as we honor the people we’ve lost and support people living with ALS today. Together, we can make a difference in the lives of those affected by ALS

 Anne Lidsky, a legacy of resilience and love

In case you missed our latest Faces of ALS spotlight:

Anne Lidsky’s journey with ALS began more than 50 years ago when she cared for her mother diagnosed with the disease. Witnessing the lack of understanding and support, Anne dedicated her life to providing compassion and guidance through ALS support groups, impacting countless families.

Her role as a facilitator started with young adults and adult children of ALS patients. Anne’s meetings became powerful gatherings, offering solace and practical advice for caregivers, forging deep connections.

Her support groups embody warmth and playfulness, creating environments for open expression and appreciation. Anne’s unwavering dedication nurtures hope and resilience for newcomers and long-time caregivers alike.

In moments of loss, Anne stands by families, attending services, and offering comfort. The impact she has made is profound, fostering gratitude and community — and we’re proud to share her story with you.

 Would you like to contribute to SOD1-ALS research?

Biogen Logo

If you think you may be a carrier of a certain SOD1 gene variant (also called a gene mutation) and you do not have any clinical signs or symptoms that definitively indicate onset of ALS, Biogen’s ATLAS Study may offer you the opportunity to contribute to SOD1-ALS research.

Those who qualify will receive all study-related treatments and assessments, including genetic testing and counseling, at no cost. Reimbursement for study-related travel is available. The Lois Insolia ALS Clinic at the Les Turner ALS Center is one of the study sites. Learn more at the clinical trials website.

ALS and Mobility 

What do you need to consider when you select a walker? And why should people with ALS take caution before getting a scooter?

Our ALS & Mobility Guide is here to help you find the right solutions to get around your home and out in the community. Discover valuable information on durable medical equipment like straight canes, rollator walkers, front-wheel walkers, and folding walkers.

Explore leg braces such as ankle-foot orthoses (AFOs) to stabilize weak ankle muscles and improve balance. You can also learn about essential considerations when choosing a wheelchair, including accessibility, insurance coverage, and features like tilt-in-space and adjustable seats. Our guide covers aids for transfers, patient lifts, and seat-lift recliner chairs, along with much more.

 Honors for Les Turner ALS Center researchers

The Les Turner ALS Center at Northwestern Medicine is dedicated to bringing fresh ideas into the field of ALS research and fostering collaboration among scientists who are driven to create a world free of ALS. We’re proud to share some of the professional recognition these clinicians and researchers have received.

Among our 2022-23 research grant recipients was Navdeep Chandel, PhD, who has been named a recipient of the 2023 Lurie Prize in Biomedical Sciences by the Foundation for the National Institutes of Health. He is currently working with Evangelos Kiskinis, PhD, on a project to characterize the metabolite changes in lysosomal and mitochondrial compartments in ALS.

Also recognized recently was Colin K. Franz, MD, PhD, who received a 2023 Scientific Impact Award from the American Association of Neuromuscular & Electrodiagnostic Medicine for his innovative work on peripheral nerve injuries. Dr. Franz is a key member of the patient care team at the Lois Insolia ALS Clinic.

Your donations support talented clinicians and researchers like these and enable long-term investments in ALS care and research, providing hope to people living with ALS and their families everywhere.