September 2023 Foundation eNews

Ashley RosenbrockFoundation eNews, Home Page

 Meet the Kravitz Krew: Two Decades of Walkin’

Gary Kravitz is the driving force behind the Kravitz Krew, a team dedicated to making a difference in the fight against ALS. With an impressive 20 years of participation, Gary’s passion is unmatched.

Since his first ALS Walk for Life at Montrose Harbor in 2004, Gary’s commitment has been unwavering. He’s missed only one event, during the year he lost his mother to ALS, yet even then, he raised substantial funds for ALS care and research. The camaraderie and reunions with fellow walkers fuel his determination.

Using technology to amplify his impact, Gary harnesses the reach of Facebook groups and Nextdoor. Prepared with a donation link, his succinct posts draw attention and support. His advice for newcomers? Leverage digital platforms, personalize messages, and make posts public for wider sharing.

Gary’s legacy is one of resilience and community engagement. As the team readies for another year, they’re lighting the path toward a world without ALS. Join Kravitz Krew and the rest of the teams at the ALS Walk for Life, Sept. 23 at Soldier Field.

“New” ALS Gene Destabilizes Neuron Structure

Neuron pic

Scientists from the Les Turner ALS Center at Northwestern Medicine have uncovered how a mutated NEK1 gene contributes to ALS. Approximately 2% of cases are linked to NEK1 mutations, making it a significant factor in the disease. The researchers found that the mutation leads to two issues within neurons.

Firstly, it weakens the support structures of the neuron’s axon, causing instability. Secondly, the mutation disrupts the neuron’s ability to import essential RNA and proteins into its nucleus, which is vital for proper cell function.

This discovery highlights potential therapeutic targets for ALS treatment and provides valuable insight into ALS mechanisms and potential treatment strategies. Read the full story on our website.

Nutrition: Journey from Beginning to End

We’re here to help answer your questions about nutrition support in ALS. Join us for our September ALS Learning Series webinar led by Dr. Edward Kasarskis, happening Thursday Sept. 14, from 12 – 1pm CST.

By the end of this webinar, you’ll better understand nutrition needs, hydration, and have tips for bowel management in ALS. There will be a Q & A session following the presentation.

Edward Kasarskis, MD, PhD, is the medical director of the University of Kentucky ALS Multidisciplinary Clinic. He is also professor of neurology at the University of Kentucky.

How to Make the Most of Your Clinic Visit

We understand the challenges you face during these appointments, and that’s why we’ve created a comprehensive guide to help you make the most out of your experience.

Are you unsure about what to expect during your visit to the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine? We’ve put together a guide to address your concerns and provide clarity on various aspects of your clinic visit.

Inside the guide, you’ll find expert insights on how to effectively communicate with your multidisciplinary care team, whether it’s about clinical trials, genetics, symptom management, or treatment options. Discover practical tips for preparing in advance, making the most of your time during the visit, and ensuring that you’re equipped with the right questions to ask.

This guide is your go-to resource for streamlining your clinic experience and gaining a deeper understanding of your care journey. We’re here to support you every step of the way, and this guide is just another way we’re dedicated to enhancing your ALS care.

Read our guide and empower yourself with knowledge before your next clinic visit.

We’re partnering with the Chicago Wolves hockey team

CW Charities Logo

We’re thrilled to announce that the Les Turner ALS Foundation is partnering with the Chicago Wolves Hockey Team as one of their charities of choice.

As the only independent ALS foundation in the Chicago area, we are excited to join forces with the Wolves and make a lasting impact together. Through this collaboration, we aim to amplify our efforts in providing comprehensive care services, funding vital research, and advocating for a world free of ALS.