ALS Awareness Month is this May
May is ALS Awareness Month — and we’re spotlighting what it truly means to live with this disease.
This week, we’re continuing our series with stories from our ALS community that bring this experience to life.
You’ve met Rob Akins, who shared the tools, routines, and assistive devices that help him navigate each day, and Matt Creen, who shared on his experience of air travel while living with ALS. This past Mother’s Day, we featured Melissa Diaz-Viera, a mother balancing parenting and life with ALS.
This week we’re turning to the theme of diagnostic delay—an issue that affects far too many people in our community. To that end, Janie Gobeli and Barbara Kinsey shared on their experience seeking medical care.
The Lew Blond 5K is this Saturday — join us!
There’s still time to be part of the Lew Blond Memorial 5K Run/Walk, happening this Saturday, May 17 in Northbrook.
Held in honor of beloved Maple School teacher Lew Blond, who passed away from ALS in 2000, this community tradition brings together hundreds of participants, volunteers, and supporters each year. Proceeds benefit ALS research through the Les Turner ALS Foundation, scholarships for future educators, and local school projects.
This course is full of heart — just like the event itself. Whether you’re running, walking, or cheering from the sidelines, your presence supports a legacy of learning, community, and compassion. We’ll have a tent, so be sure to stop by and say hello.
Come out, enjoy the spring, and make a difference this weekend.
May ALS Learning Series
Don’t miss our next ALS Learning Series webinar, Breaking Barriers: Building a Health Equity Approach to Make ALS Livable for All, happening live this Thursday.
Dr. Chelsey R. Carter of Yale University will lead a compelling session on how social and structural factors shape ALS outcomes—and what we can do to build more equitable, inclusive care. From current research to practical models of support, this webinar is for anyone looking to better understand and address disparities in ALS care.
This program is available at no cost to the ALS community, thanks to the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America.
Register now and secure your spot.
May ALS Learning Series
Join us for our May ALS Learning Series webinar with Dr. Kelly Gwathmey of Virginia Commonwealth University, as she examines the causes, consequences, and solutions to diagnostic delay in ALS.
On average, it takes 10 to 16 months to receive an ALS diagnosis — and even longer for people of color. Because there’s no single test for ALS, the diagnostic process often involves ruling out other conditions, leading to delays in care and support. Dr. Gwathmey will share real-world examples, explore systemic barriers, and discuss what can be done to improve outcomes. A live Q&A will follow the presentation.
This program is available at no cost to the ALS community, thanks to the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America. Register now to secure your spot.
All ALS is leading the charge in research
Funded by the National Institute of Health, the Access for ALL in ALS Consortium (ALL ALS), Les Turner ALS Center at Northwestern Medicine is one of 35 research sites across the United States conducting a combined longitudinal natural history study and biomarker collection study for ALS.
ALL ALS is working to build a dataset to be used for ALS research! Whether you are an individual with ALS, family member, friend, or would just like to contribute to our research, there is a place for you to get involved. Want to learn more? Visit Access for ALL in the ALS Consortium or reach out at alsresearch@northwestern.edu.
“The ALL ALS Consortium gives me real hope. It’s the large-scale study we’ve been dreaming of, designed with input from people with lived experience. By participating, you’re helping us better understand ALS.”— Lauren Webb, Chief Advocacy and Outreach Officer at the Les Turner ALS Foundation.
