January 2026 Foundation eNews - Les Turner ALS Foundation

Start your 2026 with us!

Start the new year by standing with families affected by ALS. Volunteering with the Les Turner ALS Foundation is a way to turn compassion into action—no special skills required, just a willingness to help.

From supporting events to lending a hand behind the scenes, your time can make a real difference for people living with ALS, caregivers, and loved ones. Whether you can give a few hours once or want to get involved throughout the year, there are opportunities to match your interests, schedule, and strengths.

You’ll meet others who care about this mission, build new skills, and see the impact of your support up close. We’re grateful for every volunteer who helps our community feel more connected and supported.

Explore volunteer opportunities and sign up here.

Support when it matters most: Grants and equipment loans

Caring for someone living with ALS often brings unexpected costs. The Les Turner ALS Foundation offers grant programs and equipment loans to help ease the financial burden and support day-to-day needs.

Eligible families can apply for grants annually, including assistance for certain equipment and necessary home modifications not covered by insurance, short-term respite care to prevent caregiver burnout, assistive technology that supports communication and independence, and transportation to and from the Lois Insolia ALS Clinic for appointments.

We also provide equipment loans—such as ramps, wheelchairs, and communication devices—for needs not covered by insurance or while families await approval.

Click the link here to learn more.

Join the ALS Registry

The National ALS Registry is a simple way for people living with ALS to support research that can benefit future generations. By enrolling, being counted, and completing risk factor surveys, you help scientists better understand who gets ALS and what factors may contribute to the disease. The Registry also connects participants to additional ways to get involved, including donating specimens through the National ALS Biorepository and learning about clinical trials and research studies.

Established in 2010 by the federal Agency for Toxic Substances and Disease Registry (ATSDR), the National ALS Registry collects and analyzes data to strengthen ALS research nationwide.

Click the link to visit the National ALS Registry website to learn more.

Join us for our first ALS Learning Series webinar of the new year. This session will delve into palliative care and how it can support people living with ALS and their loved ones—at any stage of the disease. We’ll discuss important elements of advance care planning, explain how hospice differs from palliative care, and share practical guidance on how to find palliative care services. Time will be reserved for questions.

Our speaker, Kara E. Bischoff, MD, is the Associate Division Chief for Outpatient Palliative Care and Medical Director of the Outpatient Palliative Care Service at UCSF (University of California, San Francisco). Dr. Bischoff has particular expertise in palliative care for people with ALS and has published extensively on outpatient palliative care beyond cancer care.

This webinar is offered at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America for sponsoring this webinar.

Register now at the link.

Guide Spotlight: ALS & Participation in Clinical Research

Considering clinical research can bring up a lot of questions. Our ALS & Participation in Clinical Research guide helps you understand the basics and make a decision that fits your needs, values, and daily realities.

You’ll learn what clinical research is, how clinical trials differ from observational studies and expanded access, and what to expect across the phases of a trial. The guide also walks you through practical steps—how to find current studies, what to ask the research team, and how to talk with your doctor or ALS care team before you decide.

You’ll also find a clear overview of your rights as a participant, including informed consent and the right to take your time and ask questions.

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

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.

Nancy Ashbrook
Bonnie Headley
Steven Koscinski
Bonnie Merriman
Kate Milashus
James Moes
Charles “Chuck” Yearman

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.