Les Turner ALS Foundation

History, Mission & Vision

Our Mission

To provide the most comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease, and advance scientific research for the prevention, treatment and cure of ALS.

Our Vision

A world free of ALS.

Our Founders

Armand Bendersky, Razzie Bendersky, Norman Friedman, Roberta Friedman, Bonny Gaffen, Harvey Gaffen, Ina Turner Jones, Harvey Klene, Marshall Krolick, Roberta Krolick, Maxine Levy, Steve Levy, Beverly Loder, Bettie Nowell, Jill Schechter, Herb Singer, Zena Singer and Ben Turner

Our History

The Les Turner ALS Foundation was founded in 1977 by the family and friends of Les Turner, a Chicagoland business owner who had been diagnosed with ALS the previous year at the age of 36. Les’s wife, Ina and their three young boys turned to Les's brother-in-law and best friend, Harvey Gaffen for help. At a time when information and research on ALS was almost nonexistent, Harvey, his wife Bonny, and Les and his wife Ina, along with their friends and family, set out to raise funds to provide vital research and resources to people living with ALS and their families. Les passed away in 1978, but this extraordinary group of founders went on to establish what is now the longest-serving independent ALS organization in the U.S.

One of the Foundation’s first and most successful fundraising events, the Mammoth Music & Record Mart, was Les’s idea. It opened in September 1978. For 25 years, the Mammoth Music & Record Mart attracted thousands of music lovers from across the country thanks to donations of recorded music, sheet music and musical instruments from far and wide. Wendy Abrams, a Music Mart volunteer, became the Foundation's first Executive Director in 1979 and went on to serve for an incredible 36 years, retiring in 2015.

Wendy and Harvey Gaffen led the establishment of the nation’s first ALS research laboratory at Northwestern Medicine in 1979, the creation of support programs to help people living with ALS and their families, and in 1986, the establishment of the Lois Insolia ALS Clinic, a multidisciplinary ALS clinic at Northwestern Medicine. In 1992, the Les Turner ALS Foundation became a founding member of the International Alliance of ALS/MND Associations. In 2014, the Les Turner ALS Center at Northwestern Medicine was formally established.

In 2014 and 2015, the Foundation appointed Ken Hoffman as its second Board Chair and Andrea Pauls Backman as CEO. Both were business executives who had lost their mothers to ALS. Under Andrea and Ken’s transformational leadership, the Foundation solidified its role as a national leader in ALS advocacy.

One of their first efforts was to partner with Northwestern University's Feinberg School of Medicine on a nationwide search that led to the appointment of Dr. Robert Kalb as the first Director of the Les Turner ALS Center at Northwestern Medicine. Working with Dr. Kalb, the Foundation expanded the basic science and clinical research programs and added many more providers at the Lois Insolia ALS Clinic, allowing people across the Midwest access to best-in-class ALS care.

Ken and Andrea recruited new voices to the board, including people with lived experience of ALS. Under their leadership, staff re-tooled the Foundation’s support services and educational programs to broaden the reach of its incomparable services nationwide. And through collaborative outreach efforts with many ALS organizations, the Foundation advanced ALS research and advocacy around the country and the world, as huge increases in federal ALS research funding and three new ALS drugs to slow disease progression and/or extend survival were approved by the FDA.

2022 and 2023 brought new leadership with the appointment of Erin Reardon Cohn as Board Chair and Laura Freveletti as CEO. Together with a talented and dedicated board, staff and volunteers, they are building upon the Foundation's legacy to help the ALS community realize the vision of a world free of ALS.

Les Turner

Opening of the Les Turner ALS Research Laboratory, 1979

Ninth annual Les Turner Symposium on ALS, 2019

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1977 Les Turner ALS Foundation Started
Les Turner ALS Foundation is founded by Les Turner and a small group of his friends and family in the Turner's living room. Today, the Foundation is recognized as one of the nation's oldest, independent ALS organizations.

1979 The Les Turner ALS Research Laboratory
First Les Turner ALS Research Laboratory opens, providing hope for a future without ALS to people nationwide. Today, the Foundation funds three dedicated ALS laboratories at Northwestern Medicine.

1986 The Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine
The Lois Insolia ALS Clinic opens at Northwestern Memorial Hospital, one of the first in the nation and the only in Chicago. Today, the Clinic is recognized as one of the nation's best multidisciplinary centers for people living with ALS.

2014  Les Turner ALS Research and Patient Center at Northwestern Medicine
Les Turner ALS Center at Northwestern Medicine forms, enhancing collaboration between the three ALS research laboratories and the Lois Insolia ALS Clinic. Today, the Center is one of the premier ALS Centers in the country. 

2014 ALS Ice Bucket Challenge
The ALS Ice Bucket Challenge sweeps the nation, increasing public perception of ALS and raising hundreds of millions of dollars worldwide. Today, increased public support is leading to greater advancements in ALS care and research.

Care. Community. Cure.

We provide individualized care, local community support and hope through
scientific research.