April 2026 Foundation eNews

Our grant programs are here to help

Navigating the daily challenges of ALS requires immense tenacity from both the person living with ALS and those providing their care. For Jay Doherty, the Dan Nelson Respite Grant Program provided a meaningful source of relief. These funds enabled Jay’s household to hire a dedicated caregiver for 12 weeks, ensuring professional assistance is available every Saturday.

Established in 2012 by Sheila McCullough, this grant provides primary caregivers with vital time away to prevent burnout. Recipients also receive a visit from one of our expert ALS Support Services coordinators to help them confidently navigate the disease. At the Les Turner ALS Foundation, we are committed to offering these individualized resources that prioritize the unique needs of every person we serve.

In order to apply for a grant, you must receive your care at the Lois Insolia ALS Clinic and speak with a member of our Support Services Team.

Click here to learn more about this and our other grant programs.

Guide Spotlight: ALS & Genetic Counseling and Testing for Family Members

Individuals with a history of ALS or related neurologic and mental health conditions within their lineage should have the option of genetic counseling. Our guide details how a genetic counselor—a healthcare provider specializing in how genes affect health—can support you in understanding inherited risk and deciding if predictive genetic testing is right for you.

This resource is a vital tool for those seeking answers about personal risk or exploring future options like clinical trials and reproductive planning. Additionally, the interactive My ALS Decision Tool™ is available to walk you through the process and help you make an informed decision at your own pace. Whether seeking clarity or emotional guidance for conversations with loved ones, we provide expert support every step of the way.

Read the ALS & Genetics guide for those with a history of the disease here, available in both English and Spanish.

The ACT for ALS Reauthorization is reintroduced and we need your help

The Les Turner ALS Foundation has joined a unified coalition of advocacy organizations calling for the swift passage of the ACT for ALS Reauthorization Act of 2026 (H.R.8205). Since 2021, this landmark legislation has transformed the landscape for people living with ALS by funding investigational treatments and accelerating therapeutic development through the FDA and NIH.

Programs like the NIH ALS Expanded Access have already supported approximately 750 individuals nationwide, yet these vital advancements may cease to exist if Congress does not act before the September 30 deadline.

We must ensure this progress continues; use our tool on the webpage below to contact your legislator today.

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.

Carolynn Bulger

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.