You helped us raise awareness all May
With ALS Awareness Month coming to a close at the end of last month, we wanted to acknowledge once more the community members who made these videos possible. Throughout the month, we focused on the financial impact, the complex diagnostic journey, the daily routines of people living with ALS and their dedicated caregivers, and most critically, how you can take action today in raising awareness. Many people living with ALS and their families are unaware of the resources available to them; the more we talk about this disease, the better our chances are of connecting them with those vital supports.
Through powerful videos, Barbara Kinsey and Rob Akins shared their daily challenges and successes living with this disease. We also heard from Rochelle Walwer, LCSW and Elizabeth Kennedy, who spoke on the stark financial and emotional toll of caregiving. By watching and sharing these stories on social media, together we helped amplify their voices to over 300,000 people, sparking change and building deeper understanding.
Together, we helped secure $300,000 for ALS care and research in Illinois
This year marked an important achievement for the ALS community in Illinois with the approval of $300,000 in state funding for ALS care and research. State funding will help expand care coordination, increase support for families, improve access to multidisciplinary care, strengthen outreach efforts, and advance research focused on life enhancing treatments.
We are deeply grateful to Rep. Kevin Olickal and Sen. Ram Villivalam for their leadership and commitment to people living with ALS and their families. We extend our appreciation to all the legislators who supported this endeavor and helped make this progress possible.
Thank you also to everyone in our community who participated in advocacy action alerts and helped raise awareness across Illinois. Together, we are building a stronger future for ALS care, support, and research.
Shape the Future of Research: Become an ALS Research Ambassador
Are you living with ALS, a caregiver, or a loved one who wants to make a difference in the clinical trial process? Applications are now open for the 2026 ALS Clinical Research Learning Institute® (CRLI), hosted by the Network of Excellence for ALS (NEALS).
This two-day educational program provides individuals impacted by ALS with the knowledge and tools needed to actively advocate for therapy development. Graduates join a community of over 600 certified ALS Research Ambassadors who help improve the research pipeline.
Travel and lodging expenses are covered for selected participants and a guest. Apply by July 6 to bring your voice to the fight for a cure.
Guide Spotlight: ALS & Communication
Preserving your connection to the people who matter most is a priority for people living with ALS as the disease progressively affects the muscles used to speak. Our ALS + Communication Guide details how to identify early changes in your voice—such as fatigue while speaking, slurred words, or a softer volume—and explains the adaptive tools available to support you. By exploring these options early, you can proactively choose alternative communication methods that protect your energy and ensure your voice is always heard.
This resource is a vital tool for those seeking practical solutions for daily living, ranging from simple alphabet boards to advanced speech-generating devices. We’ll help you prioritize these adjustments, ensuring you feel confident using assistive technology with technical advice and customized support from our Support Services team.
Read the ALS & Communication guide here, available in both English and Spanish.
This Lou Gehrig Day, join the National ALS Registry
This Lou Gehrig Day, June 2, we honor the legacy of the “Iron Horse” and celebrate the national attention he brought to this disease. For each person living with it in our community, your unique journey holds a valuable voice that can actively shape the future beyond ALS.
By joining the National ALS Registry, you provide scientists with critical data to help uncover the causes of ALS and advance vital research toward new treatments. It is a powerful act of collaboration that brings us closer to a world free of ALS.
Learn more at this link and join the National ALS Registry 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.
Renukaben Patel
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.
Support Groups
Navigating ALS Together
1st Monday Group: 2 – 3 p.m.
2nd Saturday Group: 10:30 a.m. – 12 p.m.
4th Saturday Group: 10:30 – 11:30 a.m.
ALS Caregivers
1st Monday Group: 3:30 – 4:30 p.m.
3rd Thursday Group: 3:30 – 4:30 p.m.
3rd Thursday Group: 7 – 8 p.m.
Living After Loss
4th Monday: 6 – 7:30 p.m.
Moving Forward After Loss – Partner Bereavement Group
Spring Session begins May 5
6 – 7:30 p.m.
Newly Diagnosed
1st Tuesday: 6 – 7 p.m.
Young Adult Support Group
3rd Tuesday: 7 – 8:30 p.m.
