May 2026 Foundation eNews - Les Turner ALS Foundation

Help us share stories from our community

This May, we’re continuing to illuminate the realities of the disease to foster deeper understanding and spark change. Throughout ALS Awareness Month, the focus is on the financial impact, the diagnostic journey, the daily lives of those living with the disease and their caregivers, and the specific ways you can take action.

We invite you to witness these experiences firsthand through our social media channels. These videos feature people living with ALS and dedicated caregivers sharing their daily routines and challenges. Hear Barbara Kinsey and Rob Akins share openly and honestly on their daily struggles and successes living with this profound disease. By watching and sharing these stories, you help amplify voices and raise awareness.

Take action today by clicking the link and sharing our content. You can help raise vital awareness and encourage others to join our mission of reaching a world free of ALS.

Join us Thursday, May 28, at 12 p.m. CT for our next ALS Learning Series webinar: Finding Your People. This community-led discussion focuses on the transformative power of connection and real stories of discovering strength in community following an ALS diagnosis.

Our panel features Rob Akins, Tina Cascio, Juan Reyes, and Kelly McGinn, who offer perspectives from their experiences living with ALS. Whether you are seeking national advocacy groups or local resources, this session provides the expert insights and reassurance needed to navigate every step of the journey. Following the presentation, we invite you to participate in a live Q&A session with our speakers.

We thank our sponsors, the Gilbert and Jacqueline Fern Foundation and Tanabe Pharma America, for their commitment to providing accessible education at no cost.

Please register now at the link.

Hope on the baseball diamond

On May 31, Naperville resident Marc Davidson will take the mound at Rate Field to deliver the game ball for the Chicago White Sox. Since his diagnosis last December, Marc has faced the rapid progression of ALS with resilience and immense gratitude for his local support system.

This moment is especially meaningful for Marc, as his father is traveling from Florida to watch him return to a professional baseball field. Marc finds strength in the ALS community and reminds us all to prioritize the people we love.

Join us for Lou Gehrig Days with the White Sox and Cubs! Come out to the Sox game on May 31 to cheer Marc on, or watch the Cubs play on June 2!

Purchase tickets through our link to be seated in our section and provide for ALS care, advocacy, and research.

Guide Spotlight: ALS & Breathing

Maintaining respiratory health and comfort is a priority for people living with ALS as breathing muscles may be affected at various stages of the disease. Our guide details how to identify signs of respiratory weakness—such as morning headaches, grogginess, or shortness of breath when lying flat—and explains the common tests used during clinic visits to monitor muscle strength. By understanding these changes early, you can work with a care team to proactively manage symptoms and preserve your energy.

This resource is a vital tool for those seeking practical solutions for daily living, including mucus management and the use of specialized equipment like non-invasive ventilation (NIV). We’ll help you prioritize these needs, ensuring you feel confident using things like cough-assist devices or Ambu bags with technical advice and expert insights.

Read the ALS & Breathing guide here, available in both English and Spanish.

ICYMI: Clinical trials test potential new gene therapies for inherited ALS

Our Les Turner ALS Center at Northwestern Medicine is advancing a new generation of targeted gene therapies to treat inherited forms of the disease. Led by Senda Ajroud-Driss, MD, the clinical research program is utilizing antisense oligonucleotides (ASOs) to target messenger RNA and change protein expression. By addressing the disease at its genetic source, these innovative therapies aim to restore motor neuron function and prevent further neurodegeneration.

Following the successful arrival of Tofersen for those with the SOD-1 mutation, the center is now participating in a new clinical trial for individuals that carry it. This research provides essential hope for the development of highly selective drugs that target specific genetic markers. With the ongoing support of the Les Turner ALS Foundation, our expert team continues to build the necessary infrastructure to implement these trials and move closer to a world free of ALS.

Read the full article by clicking the link.

In Our Thoughts

We offer our sincere condolences to all those who have lost a loved one to ALS. Today, and every day, we honor and remember them.

Margaret Finton
Jacinto “Jack” Maquera
Kathleen “Katie” Tennant

We invite you to share a tribute—whether a story, memory, or photo— to our Celebration of Life memorial wall, keeping the legacy of your loved one alive and reminding others they are never forgotten.

Support ALS Care and Research

The Les Turner ALS Foundation exists to care for those affected by the disease, answer their questions, support them and their loved ones, and provide hope through scientific research at the Les Turner ALS Center at Northwestern Medicine.

Please make a gift so we can continue to deliver that care and support. Together, we will create a world free of ALS.