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.
The International Alliance of ALS/MND Associations was founded in 1992 to provide support to patient-driven associations through networking and exchanging information about ALS. The Les Turner ALS Foundation and the Motor Neuron Disease Association of England, Wales and Northern Ireland, along with several others, were founding Alliance members. Today, more than 40 organizations representing 30 countries worldwide have joined the Alliance to combat ALS and Motor Neuron Disease (MND), and the Foundation hosted the 1996 and 2012 meetings of this international group in Chicago.
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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The Les Turner ALS Foundation is founded by Les Turner and a small group of his friends and family in the Turners' living room.
Today, the Foundation is recognized as one of the nation's leading ALS organizations.
The first ALS-focused research laboratory at Northwestern University Medical School is dedicated, under the direction of Dr. Burk Jubelt.
Today, the Les Turner ALS Center unites over 75 researchers and clinicians focused on research and clinical care.
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.
Dr. Teepu Siddique co-discovers the SOD1 gene, the first genetic mutation linked to cause ALS, followed by discovery of the FUS gene in 2009.
The Les Turner ALS Center at Northwestern Medicine continues to lead research to better understand the role of upper motor neurons, stem cells and genetics, helping to pave the way for future targeted therapies for ALS.
The Les Turner ALS Center at Northwestern Medicine is formally established, bringing together over 75 researchers and clinicians under one umbrella to work on ALS.
Today, the Center is one of the premier ALS Centers in the country under the direction of Dr. Robert Kalb, the Joan and Paul Rubschlager Professor of Neurology.
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.
Augmenting 30 years of unparalleled support services, the Les Turner ALS Foundation begins co-producing several best-in-class educational resources alongside people living with ALS.
Today, these include award-winning My ALS Decision Tool™ modules on breathing, nutrition and genetic testing for people with ALS, ALS information guides, and monthly ALS Learning series webinars.
Thanks to clinical trial participants and under the direction of Dr. Senda Ajroud-Driss, the ALS clinical research program at the Les Turner ALS Center at Northwestern Medicine grows to over 19 clinical trials and studies.
These trials and studies contribute to FDA approval of three new therapeutic drugs to slow the progression of ALS in 2022-23 alone — with many more to come.
