March 2022 Foundation eNews

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Foundation News

Celebrating 45 Years!

This year, we honor the vision of our founders who, 45 years ago, established a foundation to fund ALS research in honor of their friend and family member, Les Turner, a young Chicago businessman who battled with ALS for under two years. Being the oldest ALS organization in the country is not a cause for celebration. But, as long as ALS continues to take the lives and livelihoods of those we love, our ever-growing services and commitment to clinical care and research will continue. And, we have this amazing ALS community to thank for your support!

In 1977, information and research on ALS was relatively nonexistent. Out of love for his best friend, Les, Harvey Gaffen, Les’ brother-in-law and a co-founder of the Foundation, along with his wife Bonny, Les, Les’ wife Ina, and other friends and family, began raising funds for ALS research. The first ALS research lab was established in 1979, and the first grant was awarded to Northwestern Medicine. In Harvey’s words, “I couldn’t be prouder of the fact that we were able to enshrine Les Turner’s name in perpetuity and make a meaningful difference in the lives of people living with ALS and families throughout the world. There’s no way we could fathom the Foundation we have today.”

Over the last 45 years, we’ve grown and expanded the work of our Foundation in many ways. Today, our personalized, comprehensive care navigation program and extensive community education programs; Les Turner ALS Center at Northwestern Medicine, housing one of the largest multidisciplinary ALS clinics in the country plus ten leading principal investigators working on novel ALS basic and translational research, all work in tandem to attack ALS on all fronts.

Thanks to the vision of our founders and the support of the ALS community, we have been a leader in ALS research, patient care, and education for 45 years. Our strength lies in working closely with people living with ALS and their families to understand the needs of the community and to co-produce our programs. The Les Turner ALS Foundation will never shy away from the challenges in this fight against ALS.

Harvey’s vision is as strong as ever: “I believe a world free of ALS is in our future. We’re getting there, however, we realize it’s a process. There’s so much great research going on at our Les Turner ALS Center at Northwestern Medicine and throughout the world. There’s no doubt it’s going to happen. It’s only a matter of dollars and time.”

We’re with you all the way, Harvey!

In recognition of this milestone anniversary, please consider a one-time gift of $45 or join an elite group of supporters by becoming a monthly donor with a recurring gift of $45. There is much work to be done and your gift will make a significant impact for people living with ALS today and in the future. New monthly donors will receive a Les Turner ALS Foundation Stainless Steel Water Bottle.  



NINDS Asked, and We Responded.




As part of the Foundation’s commitment to the ALS community, we recently helped shape the strategic planning process for ALS research funding priorities being conducted by the National Institute of Neurological Disorders and Stroke (NINDS), a branch of the National Institutes of Health (NIH). NIH is the largest biomedical research agency in the world. In our response, we identified key research and priorities at NIH and beyond that will transform research and care.

We implore the NINDS to better understand the genetic and environmental causes of ALS, create an infrastructure that facilitates collaboration and focus on patient-centric clinical trial design, including equitable access to the latest therapies and treatments for everyone living with ALS. We also address the need for home health care support and mental and emotional health care for people living with ALS and their caregivers.

We are in awe of the power of the ALS community to move ALS research forward.

Together, we can make a difference!

Read our full responses to the NINDS in our blog.

New Support Group – Living After Loss

The Les Turner ALS Foundation offers a variety of facilitated and comforting support groups to those in the ALS community. In 2020, we launched the ALS spouse and partner bereavement group, Moving Forward After Loss, and last year, a new Caregivers-Only support group, recognizing the needs of caregivers in the ALS community. This year, we are pleased to announce the launch of another much-needed group, Living After Loss.

Living After Loss, facilitated by Easton Stevenson, LCSW, is a supportive monthly bereavement group that is open to anyone (family, friends, etc.) who has lost a loved one to ALS within the past year. This group offers a place to connect with others who have experienced the loss of a loved one to ALS and to share stories, express feelings, and explore ways to honor the memory of their loved one.

The first meeting will be held on Monday, March 28, 2022, from 6:00 pm – 7:00pm on Zoom. Meetings will be held the fourth Monday of every month and each group meeting will be one hour.

If you are interested in joining the Living After Loss monthly bereavement group, register below and select the Living After Loss group.




Give Back Through the myWalgreens Donation Program!



myWalgreens is a one-of-a-kind personalized experience that makes saving, shopping, and your well-being easier. As part of this experience, from March 1 through May 31, you can donate your 1% Walgreens cash rewards to the Les Turner ALS Foundation. It’s that easy, and it’s FREE.

Within the donation experience, if your preferred store location doesn’t include the option to give to the Les Turner ALS Foundation, manually change your ZIP code to 60077 or city to Skokie and donate. If you are already a member of myWalgreens, great. If not, download the myWalgreens app today or sign up at Thank you for your support.