The story of the Les Turner ALS Foundation begins with one man’s Amyotrophic Lateral Sclerosis (ALS) diagnosis in 1976. Les Turner, a charismatic, Chicago area businessman, husband, and father, was frustrated by the lack of local resources available to manage the devastating effects of this disease. His family and friends supported his singular desire to nurture hope in other ALS patients and families by providing others stricken by the disease with the resources, support, and anticipation for a cure unavailable to him. In doing so, they inspired his legacy.
The following are just a few of the highlights from our journey.
Then: Les Turner’s family and friends start the Foundation.
Now: Thousands of friends now comprise the Les Turner ALS Foundation family, and have combined to raise or donate nearly $50 million to fight ALS.
Then: The first Mammoth Music Mart fundraiser, a large tent sale of donated music items, is held at the Old Orchard Shopping Center in Skokie. The event was the brainchild of Les Turner, who watched from his wheelchair as old records were being thrown away, and created a plan to put that old music to use in the fight against ALS.
Now: The Mammoth Music Mart continued as the Foundation's signature event until its last and best year in 2002. Since then, the ALS Walk4Life has taken over as the Foundation's signature event.
(Pictured at the celebration of the final Mammoth Music Mart, left to right: WXRT Radio DJ Lin Brehmer, Honorary Chairman Dick Clark of American Bandstand, Skokie Mayor George VanDusen, WGN's Roy Leonard, and Marc Schulman of Eli's Cheesecake.)
Then: The Les Turner ALS Research Laboratory is dedicated at Northwestern University Feinberg School of Medicine.
Now: The lab was re-dedicated in 1992 when it moved to a new location at Northwestern. Both the research space and the research staff quadrupled as a result of this move.
Then: Support groups are formed to serve patients, families and caregivers.
Now: Support groups continue to meet monthly at locations around the Chicago area.
Then: The Les Turner/Lois Insolia ALS Center is opened at Northwestern. It is the result of a partnership between the Les Turner ALS Foundation, Northwestern, and the James V. Insolia Family Foundation, who helped establish the Center to honor their wife and mother, Lois.
Now: In addition to treating patients from the Chicago area, clinic staff contributes to the total care of ALS patients by sharing their learning at national and international ALS conferences. The staff also hosts a bi-annual international nursing symposium.
(Pictured, left to right: Burk Jubelt, MD, first chief investigator for the Les Turner ALS Research Laboratory; Shari Diamond, RN, BSN, first clinical nurse coordinator and current in-home ALS nurse consultant; Scott Heller, MD, first clinical director and current clinical associate professor of neurology.)
Then: The first ALS nurse consultant, June Braun, RN, is hired for the Home Care and Community Services Team. (Pictured at right: June, celebrating her retirement in 1995.)
Now: Three nurse consultants and one social worker, each with decades of experience in the particular needs of ALS patients and families, visit hundreds of patients and hold over 50 community education sessions each year—stretching from Rockford, to the Wisconsin border, to Northwest Indiana.
Then: Miles for Monte is founded by friends and family of Monte Briner. From his wheelchair and computer, while on a ventilator, Monte served as chairman. They orchestrated a fabulous event that raised more than $900,000 over the years. The event was held one last time after Monte's death in 1998.
Now: Using Miles for Monte as a model, dozens of families and community groups hold fundraisers on behalf of the Foundation each year. One of the most successful, Diamond Dare, has raised over a quarter of a million dollars in its seven-year run. Diamond Dare is organized each year by Ross Wolfson.
Now: Dr. Siddique’s lab continues to investigate the causes and treatments of ALS. The lab also has an extensive tissue bank, used in genetic investigations, and employs a full-time genetic counselor for families with the inherited form of the disease. Along with the Les Turner/Lois Insolia ALS Center, the lab is one of the leading centers for clinical drug trials in the treatment of ALS.
Then: The Les Turner ALS Foundation is a founding member of the International Alliance of ALS/MND Associations. The Alliance was created to provide a forum for support and the exchange of information between the worldwide patient associations.
Now: More than 50 patient-driven groups from over 40 countries worldwide have joined together to form the International Alliance. Alliance members host the annual International Symposium on ALS/MND, the pre-eminent event for both leading researchers and health care professionals worldwide to present and debate key innovations in the fight against ALS. The 2012 International Symposium will be held in Chicago and hosted by the Les Turner ALS Foundation.
Then: The first cause of ALS is identified! Dr. Siddique co-discovers the SOD1 gene, one of the causes of the inherited form of the disease known as "familial ALS."
Now: In 2001, Dr. Siddique discovered another ALS gene, the ALSIN gene—and a third, the FUS gene, in 2009.
Then: The Les Turner/Lois Insolia ALS Center moves to its permanent home in the new Northwestern Memorial Hospital – Galter Pavillion.
Now: The clinic now sees over 600 patients each year, serving 90% of the patients in the Chicagoland area.
Then: The Les Turner ALS Walk4Life is launched.
Now: After 10 years and thousands of walkers, the ALS Walk4Life outgrew its Montrose Harbor location. In 2012, the Walk moved to Soldier Field to allow for even more growth. Since 2002, the event has raised well over $7 million.
Then: The Foundation institutes an in-home respite grant program, and the first medical equipment grant (now known as the Ralph Russo Patient and Family Services Grant Program) is made available to patients in need.
Now: More than $100,000 has been raised for the Ralph Russo Patient and Family Services Grant Program, and thousands more has been made available in respite grants.
(Pictured: Ralph Russo with former Chicago Bear and Foundation spokesman Keith Van Horne.)
Then: Dr. Teepu Siddique is invested as the Les Turner ALS Foundation/Herbert C. Wenske Foundation Professor at Northwestern University Feinberg School of Medicine. (Pictured, left to right: Harvey Gaffen, President, Les Turner ALS Foundation; Dean Lewis Landsberg, Northwestern University Feinberg School of Medicine; Dr. Teepu Siddique; Howard Stone, Wenske Foundation)
Now: In 2010, Dr. Siddique and his team published a landmark paper detailing a relationship between familial ALS and non-inherited cases known as "sporadic ALS." These researchers linked a rare genetic cause to most cases of ALS, clearing the way for new therapies and treatments to be developed.
Then: Dr. P. Hande Ozdinler, assistant professor of neurology, is named director for the second Les Turner ALS Research Laboratory at Northwestern University Feinberg School of Medicine.
Now: Dr. Ozdinler and her team focus on the motor neurons which reside in the brain, and connect with motor neurons in the spinal cord to initiate and control movement. The team has developed novel in vitro approaches to investigate specific neuron populations with high precision.
Then: Northwestern hosted an anniversary symposium, “Celebrating Partnership,” to honor 30 years of work with the Les Turner ALS Foundation on behalf of ALS research and treatment.
Now: The Foundation's partnership with Northwestern continues to be a source of innovations in research and treatment. In 2011, Foundation researcher Dr. Siddique and his team, working from their laboratory at Northwestern Medicine, released a paper identifying for the first time a common cause of all forms of ALS.
(Pictured: Foundation President Harvey Gaffen and Executive Director Wendy Abrams with the award Northwestern presented in honor of 30 years of partnership.)
Then: The Run4ALS program is founded, giving runners, triathletes and other athletes a way to fundraise on behalf of the Foundation. The program launches with a signature race, the Strike Out ALS 5K, and teams at a variety of Chicago-area races.
Now: The program continues phenomenal growth as it approaches its third year. The Strike Out ALS 5K has grown to nearly 500 runners, and the Foundation has added another signature 5K, the Iron Horse 5K. Teams compete in races such as the Chicago Marathon, Illinois Marathon, and Rock 'n' Roll Chicago Half-Marathon. In 2012, Run4ALS also sent a team to the New Jersey Marathon, headlined by Chris Benyo and Denise DiMarzo.
Now: The 25th Annual Hope Through Caring Award Dinner was a record breaking year with more than 450 guests and upwards of $528,000 raised. The night honored the family of A. William (Bill) Haarlow, left to right: Lauren and Blair, Lynne, Bill and Laurel Haarlow. They were honored not only to remember their beloved husband and father but also to recognize their extensive and unwavering contributions to the Les Turner ALS Foundation. Since Bill’s diagnosis, they have each played an active role in helping the Foundation fulfill its mission so that others will not experience the effects of ALS. The “Hope Through Caring Award”, which was established in 1988 to honor those who are dedicated to raising funds and awareness about ALS.