December 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

Every Moment Counts: Brian and Katy’s ALS Journey

This holiday season, join us in making an impact on families like Brian Davis, Katy McNeil, and their two young children, Ada and Penny.

Brian’s journey, from a difficult diagnosis to care at the Lois Insolia ALS Clinic, showcases the vital role your donations play. Every gift ensures families like theirs receive world-class care and support to navigate the challenges of ALS. Make that critical gift now.

Your donation helps families plan for the future, face constant changes, and find stability in the midst of ALS uncertainties. Make every moment count—visit our website to contribute to ALS care and research.

Studies Identify Novel Underpinnings of ALS

We’re excited to share groundbreaking insights from the research of Dr. Evangelos Kiskinis. His recent studies delve into the cellular mechanisms of genetic amyotrophic lateral sclerosis (ALS), building understanding of this complex disease. Dr. Kiskinis, an associate professor and member of the Les Turner ALS Center at Northwestern Medicine, focused on familial ALS caused by the C9ORF72 gene and the SOD1 gene, shedding light on their respective molecular pathways.

“We’re excited by the fact that iPSC-derived neurons from patients that have these mutations survive a lot longer when we give them this bait molecule, which means that it’s doing something good. We just need to figure out if it could be a viable and transformative therapeutic,” Kiskinis said.

In another study, the researchers looked at how different genes causing ALS might be connected. They found that one specific protein, valosin-containing protein (VCP), does drives progression of SOD1-related ALS. Changing the levels of VCP seemed to stall that progression, meaning this could be a good direction for future treatments.


Mental Health Needs & Supports for People Living with ALS and their Caregivers

This December, the ALS Learning Series will feature Dr. Melinda Kavanaugh, a professor of social work at UW-Milwaukee and a licensed clinical social worker.

She’ll discuss how ALS affects mental health and the need for support – for both the person living with ALS and their caregivers, including children. She’ll also review recent research findings informing supportive interventions and tools, targeting support for the whole family.

Register today.

Gift Guide for People Living with ALS

Discover the perfect gifts for your loved one living with ALS this holiday season! Our latest article unveils thoughtful suggestions curated by our Support Services team. From communication aids to entertainment options, find the ideal present for your loved ones.

This holiday, celebrate your ALS heroes with meaningful gifts that bring comfort and joy. Click for some festive inspiration!

Honoring Veterans: A Call to Action Against ALS

This Veterans Day, we saluted the brave individuals who’ve served our nation by calling attention to a critical issue: U.S. military veterans are twice as likely to develop ALS compared to non-veterans.

In the Chicago Tribune, Laura Freveletti, our CEO, emphasized the urgent need for attention to this alarming reality. In partnership with the Hines VA, we work every day to support these veterans, and we strive to uncover the causes of the disease at the Les Turner ALS Center at Northwestern Medicine.

Through your support, we can honor those who’ve sacrificed for our country. Read the full letter.