Celebrating Strength

Annual Report 2013

Advancing scientific research Providing care and support Increasing awareness and education

159669 Annual Report.indd 1 4/18/14 6:55 AM About ALS Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease or motor neuron disease (MND), is a progressive disease that causes muscle weakness, difficulty speaking and swallowing and generally, complete paralysis. In most cases, while the body continues to deteriorate, the mind remains unaffected. There is no known cure for ALS and once diagnosed, patients typically live only three to five years.

Mission Statement The mission of the Les Turner ALS Foundation is to: advance scientific research into the causes, treatments and prevention of ALS; provide people living with ALS, their families and caregivers exceptional clinical care and support services; and increase awareness and education of ALS.

159669 Annual Report.indd 2 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013

Message from the President and the Executive Director

Dear Friends,

You may have noticed the Foundation got a new look in 2013! We are so grateful to the marketing firm of Ogilvy & Mather Chicago for adopting us as their pro-bono client and making this new look possible. We hope you like it as much as we do! Be on the lookout this May for a powerful marketing campaign designed by Ogilvy to commemorate ALS Awareness Month.

Harvey Gaffen Our facelift was officially unveiled in September at the 2013 ALS Walk President for Life. For those of you who were able to join us, you know it was a day filled with inspiration and hope. It was also our most successful year ever, with more than 6,500 members of the ALS community gathered at Soldier Field who raised a record-breaking $942,000!

We know that we cannot fight the battle against ALS alone. The Foundation partnered with the ALS Association and MDA in November to host the 8th annual ALS Nursing and Allied Healthcare Professional Symposium. More than 250 ALS healthcare professionals from ALS centers around the world filled sessions to capacity and heard the most Wendy Abrams recent updates on ALS research and clinical care. Executive Director We take great pride in our financial accountability. In 2013, the Foundation was awarded a four-star rating by Charity Navigator – the highest rating possible. You can feel confident we take your generosity very seriously and take great effort to spend wisely, the outcome of which is outlined in this report. We are proud to share these achievements with you, because they would not be possible without you.

In 1977, the friends and family of Les Turner envisioned a world free of ALS. Today, we are still working hard to see that vision realized and we would like to thank you for inspiring us every day.

We are inspired by your dedication. We are inspired by your generosity. But mostly, we are inspired by your strength. We celebrate your strength and the strength of the ALS patients and families we serve. We promise never to stop working until there is a cure.

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159669 Annual Report.indd 3 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Advancing Scientific Research

Celebrating Strength In Research Funding medical research into the cause, treatment and cure for ALS has been a fundamental goal of the Les Turner ALS Foundation since its inception in 1977. The Foundation’s first major achievement was the 1979 opening of the nation’s first laboratory dedicated solely to ALS research at Northwestern University Feinberg School of Medicine. The Foundation remains affiliated with Northwestern and continues to fund cutting-edge research. It is only through scientific research that the Foundation can provide ALS patients of today hope for tomorrow.

Complex Genetics of ALS and Related Disorders Major 2013 Accomplishments: Teepu Siddique, MD Further study of UBQLN2 and SQSTM1 suggested that both affect the ubiquitin- This laboratory is focused on understanding the proteasome and autophagosome-lysosome systems in ALS. This is an important link between neuronal function and the disease state, ALS. Additional studies processes by which ALS develops so that rational showed that ubiquilin2 can be manipulated to reduce the toxicity of the SOD1 and effective treatments can be developed. Led by gene in cell culture, as well as prolong survival in the SOD1 mouse. Dr. Siddique since 1991, he and his colleagues carry out a wide range of molecular genetic experiments to The lab’s approach to rational treatment based on disease mechanisms led to understand the causes of ALS and identify biomarkers identification of several new compounds to reduce toxic loads of SOD1 in SOD1- ALS. These will be tested in the SOD1 mouse model and then used specifically to to diagnose and track ALS progression. treat patients with mutations in the SOD1 gene. There are more than 200 SOD1 families with at-risk individuals who could potentially benefit. The lab’s research focuses on the complex genetics of inherited (familial) ALS and related disorders, Testing of Acthar and other forms of ACTH resulted in a nearly statistically significant increase in life span for SOD1 mice, and more importantly, a 50% employing a wide range of strategies to identify several reduction of SOD1 protein in spinal cords of SOD1 mice, providing another genes that cause ALS, including the SOD-1 gene. Dr. potential therapy for SOD1 patients and people at risk in their families. Siddique has also developed animal models for SOD1- and ALSIN-ALS. In 2011, Dr. Siddique and his team identified a faulty protein pathway, ubiquilin2, as the first known cause of all types of ALS.

Upper Motor Neurons and Early Detection Major 2013 Accomplishments: ALS Markers Discovered a way to isolate and visualize the diseased upper motor neurons and, P. Hande Ozdinler, PhD for the first time, dressed them in a green fluorescent jacket making them easier to study. This laboratory focuses on the upper motor neurons, which reside in the brain, and connect with motor Developed the first in vivo drug-screening platform using motor neuron survival neurons in the spinal cord to initiate and control as a read-out for success. movement. Cortical and spinal motor neuron Developed approaches for direct gene delivery into the diseased upper motor populations progressively degenerate in ALS and neurons. therefore require immediate attention. Hosted the 3rd Annual Symposium on ALS and NeuroRepair titled: “Common Identifying early detection markers in ALS and and Unique Biology Between Cancer and Neurodegeneration” at Northwestern developing neuron-specific genetic therapeutics to University. upper motor neurons is the primary focus of this Awarded over $2.5 million through three grants: two from the National Institutes laboratory. Since its establishment in 2008, the lab, of Health (NIH) and one from the ALS Association. With more than 70,000 led by Dr. Ozdinler, has received multiple awards and grant applications submitted annually, to receive two NIH grants from the same developed numerous new research tools, such as a study section and on the first application is a remarkable testament to the lab’s novel reporter model, and an in vitro, small-scale drug achievements and vision for the future. screening platform using pure populations of upper motor neurons.

Donor Appreciation Night Each year, the Foundation hosts a special night for donors to meet the members of the labs and take personal tours. The 2nd annual Donor Appreciation Night was held in November and more than 40 friends of the Foundation got a firsthand look at this amazing research. The Foundation also honored Ogilvy & Mather Chicago with its Corporate Partner Award.

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159669 Annual Report.indd 4 4/18/14 6:55 AM Then & Now

1 small laboratory 1979 4 scientists on staff

2 state of the art research facilities 2013 29 scientists on staff

159669 Annual Report.indd 5 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Providing Care and Support

Celebrating Strength In Patient Care The Les Turner ALS Foundation patient service programs help people with ALS (PALS) and their loved ones cope with the day-to-day challenges of living with a chronic disease. The Foundation offers a comprehensive continuum of care that provides critical support to improve a patient’s quality of life.

In April, the Foundation honored Richard “Dick” Conducted 719 patient visits Allocated financial assistance Jacobson as Patient of the Year and Mike “Mish” to 185 unique PALS and 154 grants to 15 PALS through Shedlock as Volunteer of the Year at the 2013 loved ones by an ALS Patient the Ralph Russo Patient and Education Forum and Volunteer Reception. and Family Advocate Family Services Grant Program

In November, the Foundation, in partnership with Northwestern Medicine, the ALS Association and Awarded 18 PALS grants Facilitated monthly support the MDA – ALS Division, hosted its eighth ALS/ through the Dan Nelson ALS groups to 436 PALS, family and MND Nursing and Allied Healthcare Professionals Respite Grant program friends Symposium. A record 250 registrants from ALS centers all over the world participated in the three day conference. Nurses, clinic coordinators and other allied Provided transportation to 30 healthcare professionals were given the opportunity to PALS to the Les Turner/Lois explore new trends, share current practices and review Insolia ALS Center through the resources that they could bring back to their teams. Stuart Rosen Transportation Fund In December, members of the International ALS and MND community gathered for the Annual Meeting of the International Alliance of ALS/MND Associations Les Turner/Lois Insolia ALS Center and the International Symposium on ALS/MND in The Les Turner/Lois Insolia ALS Center at Northwestern in Chicago is Milan, Italy. Wendy Abrams, Executive Director, and considered one of the nation’s top treatment centers for ALS. Trained Laurie Fieldman, LCSW, Director of Social Services, specialists use a team approach to provide comprehensive diagnosis and represented the Foundation at these events where the disease management. They are dedicated to the total care and support of best and the brightest from around the world gathered PALS, their families and caregivers. In 2013, there were 750 patient visits to the center, including 178 new PALS. to share initiatives and develop strategies for fighting ALS/MND. Laurie Fieldman presented at the Allied Professionals Forum event. Dr. Senda Ajroud-Driss of the Les Turner/Lois Insolia ALS Center and Drs. P. Hande Ozdinler and Javier Jara of the Les Turner ALS Research Laboratories, both at Northwestern Medicine, also presented posters at the meeting.

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159669 Annual Report.indd 6 4/18/14 6:55 AM Supporting Patients

patient visits to 185 PALS 719 and 154 loved ones

families received 63 financial assistance

PALS in monthly 436 support groups

159669 Annual Report.indd 7 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Increasing Awareness and Education

Celebrating Strength In Philanthropy The Foundation raises funds in many ways: fundraising events, major gifts, planned giving, grants and memorial gifts, just to name a few. That means there are many ways for you to show your support. If you would like to participate in any one of the Foundation’s fundraising efforts, please contact us at 847 679 3311.

Hope Through Caring Tag Days ALS Walk for Life Award Dinner (Chicagoland) (Soldier Field) (Ritz Carlton Chicago) Volunteer fundraising drives More than 6,500 in attendance Honoring Dr. Scott Heller, the held in 32 locations during ALS a Foundation record first Director of the Les Turner/ Awareness Month Lois Insolia ALS Center Raised over $942,000 Raised over $82,000 a Foundation record Raised over $500,000

Run for ALS Wine Country Conference 3rd Annual Gary Griffith (Chicagoland) (Sonoma, California) Golf Outing More than 950 runners Economic Conference hosted by (Lemont, IL) Mike “Mish” Shedlock Hosted by the Griffith Family in Raised over $247,500 memory of Gary Griffith Raised over $237,000 for ALS research Raised over $23,000

Young ProfessionALS The Young ProfessionALS Group (YPG) gathers once a month to socialize, provide support and discuss new ways to raise awareness and funds for the Foundation. Members, many of whom have been directly touched by ALS, participate in several fundraisers annually including an NCAA Bracket Challenge, a cocktail hour and their signature event, Holla for ALS Casino Night. Thanks to their fundraising efforts, YPG raised nearly $17,000 for the Foundation’s research and patient service programs in its first year.

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159669 Annual Report.indd 8 4/18/14 6:55 AM Fundraising Over $2,875,000 raised for ALS

159669 Annual Report.indd 9 4/18/14 6:55 AM Les Turner ALS Foundation Annual Report 2013 Financial Report

Financial Report Condensed Financial Statement for the year ended December 31, 2013. (Expressed in thousands of US Dollars)

Temporarily Unrestricted Restricted Total Year

Statement of Financial Position Total Assets $ 2,783,996 122,525 2,906,521

Liabilities and Net Assets Current Liabilities 1,515,021 0 1,515,021 Long-term Liabilities 142,000 0 142,000 Net Assets 1,126,975 122,525 1,249,500 Total Liabilities & Net Assets $ 2,783,996 122,525 2,906,521

Statement of Activities

Public Support & Revenue Fund-raising Events (net) 1,450,980 22,175 1,473,155 Grants 99,450 98,300 197,750 Contributions & Bequests 477,020 73,653 550,673 Memorials 171,245 530 171,775 Annual Appeal 142,029 0 142,029 Investment Income 5,588 0 5,588 Net Assets released from Restrictions 592,167 (529,167) 0

Total Public Support Revenue and Reclassification $ 2,875,479 (334,509) 2,540,970

Expenses Program Services Research 762,223 Les Turner/Lois Insolia ALS Center 538,000 Patient & Family Services Expenses 659,605 Education Expenses 258,471 Supporting Services Expenses Financial Development and Campaign 151,295 Management and General 375,913

Total Expenses $ 2,745,507 Increase in Net Assets 129,973 (334,509) (204,536) Net Assets: Beginning of Year 997,003 457,034 1,454,037 Net Assets: End of Year 1,126,976 122,525 1,249,501

Revenue Expense Contributions Patient and & Bequests–21.67% Family Services–24.1% Grants–7.78% Education–9.4% Memorials– Financial 6.76% Development– Annual Appeal– 5.5% 5.59% Management– Investments– 13.7% 0.22% Les Turner/Lois Insolia Fundraising ALS Center–19.5% Events–57.98% Research–27.8%

10 The foregoing condensed financial statements have been derived from the audited financial statements, which are available for public inspection at the offices of the Les Turner ALS Foundation.

159669 Annual Report.indd 10 4/18/14 6:55 AM Supporters Les Turner ALS Foundation Annual Report 2013

Our Generous Supporters The Les Turner ALS Foundation appreciates every donation, regardless of the amount. The following list of donors represents gifts of $1,000 and above. Unfortunately, we are unable to recognize all donors in this report.

Honored Friends Northwestern University Mr. and Mrs. Howard J. Polk Ms. Catherine Burzik Holla for ALS Casino Night ($100,000 and above) Feinberg School of Medicine Mr. and Mrs. Gary Sagui Mr. John Caldwell (YPG) Anonymous Paul A. & Joan S. Rubschlager Mrs. Katherine Sellas Mr. Jim Carlisle and Ms. Mr. and Mrs. Michael C. Frances E. Slepicka Trust Foundation Mr. Oscar and Mrs. Sepulveda Rosemary Biel Howard Hussman Strategic Mr. and Mrs. Robert S. Socol Mr. and Mrs. Peter Stewart Caruso & Miles LTD. Mr. and Mrs. Patrick Hughes Advisors Inc. Ms. Nancy R. Stamm Mr. and Mrs. Howard L. Stone Mr. Dennis Cerasoli Mr. and Mrs. Jim W. Humay Patricia Nelson Stiede Trust Dr. and Mrs. John W. Tschanz Stuercke Cubs Rooftop Event Dr. Cameron Colvig Mr. and Mrs. Mark Hutnyan Ride for 3 Reasons (Bob Lee) Willow Springs Foundation Mr. and Mrs. Richard Todd Mr. and Mrs. Alfred Contarino IEASO Members Wine Country Conference Unbridled Eve Mr. John T. Culliton Iris Bruhnke Trust (Mike Shedlock) Supporting Friends United Displaycraft D&W Fine Pack LLC Mr. and Mrs. Bruce Iversen ($5,000 - $9,999) Mr. and Mrs. Robert Vihon Damico Family Foundation Mr. and Mrs. Richard Sustaining Friends Anonymous Walgreens Sleep and Mr. and Mrs. Al D’Andrea Jacobson ($50,000 - $99,999) The Arthur J. Gallagher Respiratory Services Mr. Andrew W. Daniels Mr. and Mrs. Joseph Jacobson Diamond Dare VIII Foundation Mr. Jon Wanzek Ms. Rebecca Davies Mr. and Mrs. Richard Jaracz (Ross Wolfson) Ayco Charitable Foundation Mr. and Mrs. Joseph Weil Mr. and Mrs. Jeffrey A. Davis JDI Realty, LLC Mrs. Evangeline R. Haarlow Mr. and Mrs. Peter Barrett Young Family Foundation Mrs. Louise de la Fuente and Jerome S. & Grace H. Murray James V. Insolia Family The Berner Charitable & Mr. Mace Rosenstein Foundation Foundation Scholarship Foundation Discovering Friends Mr. Sean P. Deasy John & Carol Walter Family Mr. and Mrs. Matthew S. ($1,000 - $4,999) Mr. Eric Denton Foundation, Inc. Inspiring Friends Brown Abe and Ida Cooper Mrs. Laverne Dillon Jordan Industries, Inc. ($25,000 - $49,999) Cardinal Health Foundation Mr. and Mrs. Mark D. Dillon Mr. and Mrs. Alan Kalfen Anonymous Foundation Inc. Ms. Wendy M. Abrams Mr. and Mrs. Patrick D. Dillon Mr. Stephen D. Kant Biogen Idec Mr. and Mrs. Joseph Centers Abt Family Charitable Ms. Denise DiMarzo and Mr. and Mrs. Gary G. Kash Foglia Family Foundation Mr. Jim Chanos Foundation Mr. Chris Benyo Mrs. Sandra K. Katzel Mr. and Mrs. Blair Haarlow Dr. Cynthia Charlier Ms. Mary Adams Dr. Jason Draut Mr. and Mrs. Jerry Kaufman Dr. and Mrs. William N. Dr. and Mrs. Mark S. Cohen Dr. and Mrs. Irving J. Adatto Mrs. Antoinette J. Drury Mr. and Mrs. Kenneth Haarlow The Cooper Foundation Adreani Foundation DynaVox Systems LLC Kaufman Haarlow Family Charitable Mr. and Ms. Thomas L. Mr. Ernest Aeschliman Mr. Ray Eckstein Keating Family Foundation Foundation Culliton Mr. Nader Afshari Mr. and Mrs. Jonathan Eig Mr. and Mrs. Morton S. Kessel Mr. and Mrs. Richard M. The Davee Foundation Ms. Anne C. Albertine Erma Krider Golf Outing KeyBank Foundation Hirsch The David A. Staudt Memorial Allan L. Maca Foundation Evanston Financial Mr. Jack Klues Peggy and Raymond Gordon Fund American Chartered Bank Mr. Mebane Faber Mr. Lester B. Knight Family Delta Dental of Kentucky Mr. Gregory G. Andresen Mr. Otavio Fakhoury Mr. Robert Knuepfer Mr. and Mrs. Loren H. The Dennis J. Smith Legacy Annual Halloween Bash Mr. and Mrs. W. James Farrell Mr. and Mrs. John Koehler Semler, Jr. Foundation Inc. (Deirdre Looney & Jen Mr. Ernest J. Felton Mr. Gerald Kowalski Deutsch Levy & Engel Bochenek) Mr. John D. Fern Mr. and Mrs. Harry Devoted Friends Chartered Mr. and Mrs. Gregory S. Apter Mr. and Mrs. Lawrence I. Field Kraemer, Jr. ($10,000 - $24,999) Mr. and Mrs. Harvey Gaffen Arts4ALS (Eve Brownstone) Mr. Richard Fitzgerald Mr. and Mrs. Derrick J. Kraus The ALS Association Gavel International Mrs. Dawn Ashner Mr. John J. Fogarty Mr. and Mrs. Steve Krider Armin & Esther Hirsch Gilbert and Jacqueline R. Fern Mr. Mark Atkins Mr. Thomas Forester Mr. and Mrs. Roy Krizizke Foundation Foundation Mr. Bruce Bachmann Mr. Jim Foster Mr. Steven Kruse Mr. Neil Berg Gofen and Glossberg, L.L.C. Mr. Tom Barrett Ms. Nicola Fritz Ms. Laura Kunberger Charles & M.R. Shapiro Gold Eagle/STA-BIL Mrs. Millicent S. Bates G-Bar Philanthropic Mr. Donald Lamberti Foundation Hand Surgery Associates, S.C. Baxter International Foundation Mr. and Mrs. Al Landauer Chicago Bandits The Harry T. Mangurian, Jr. Foundation Mr. Jay Gibble Mr. Paul Langer Mr. and Mrs. Gerald Cohen Foundation, Inc. Bedell World Citizenship Mr. Wade Gibson Mr. Michael Lankheim The David DeJesus Family Hill-Rom Fund Mr. and Mrs. Bob Gilhooley Mr. Jonathan Lederer Foundation Mr. and Mrs. Robert F. Hirsch Benchmark Construction Mr. and Mrs. Marin Gjaja Mr. and Mrs. Nicholas T. Mr. and Mrs. Gilbert Fern Hitachi Data Systems Company, Inc. Mr. and Mrs. William H. Leftakes Ms. Robin D. Fern John W. Anderson Mr. and Mrs. Armand H. Gofen Ms. Marcia M. Lehmann First Bank of Highland Park Foundation Bendersky Mr. Mark Gogolewski Mr. John Letchinger and Fiserv Solutions Inc. Mr. and Mrs. Robert Jones Mr. Jim Berens Ms. Mary Anne Goldberg Ms. Robin Wolkoff Full Circle Foundation Kathleen R. Whelan Mr. Steve Berliant Mr. Jonathan Goldman Mr. Michael Levitt Gary Griffith Golf Outing Family Trust Mr. James I. Black III Mr. and Mrs. Ronald Goldman Logan County Title Company The Grainger Foundation Katten Muchin Blick Art Materials Mr. Irwin M. Goldstein Mr. James Lokey Dr. and Mrs. Scott L. Heller Rosenman LLP Mr. and Mrs. John Blink Ms. H. Lynette Goldstein Mr. and Mrs. Frank J. Mr. and Mrs. Kenneth Mr. and Mrs. Jeffrey R. Kautz Blum-Kovler Foundation Mrs. Mary Goodspeed Lombardo A. Hoffman Lemme Insurance Group, Inc. Mr. and Mrs. Thomas F. Master Joey Greenfield Ms. Laura Long Herbert C. Wenske Mr. and Mrs. Jim I. McClure Boleky Mrs. Kim Griffith M. Ward Manufacturing Foundation McGladrey LLP Boyle Family Foundation Mrs. Chris Gurke Co., Inc. Illinois Tool Works Inc. McNamara Purcell Foundation Ms. Maureen Bradley Mr. Stephen Hackney Mr. and Mrs. Richard JPMorgan Chase & Co. Microsoft Corporation Mr. and Mrs. Jim Bresingham Mr. and Mrs. J. Patrick Hanley Machalinski ALS Awareness 5K Muscular Dystrophy Mrs. Rhona Bresler Mrs. Dorothy Hardy Ms. Joan Madeja (Lori Lessen) Association - National Office Mr. Matthew O. Briggs Mr. and Ms. Mike Heneghan Mr. Christopher Madison Lew Blond Memorial Mr. and Mrs. W. Scott Nehs BrightStar Healthcare Mr. and Mrs. Bruce Heyman Magic Charitable Foundation 5K Run/Walk Mr. and Mrs. Jon Newsome Schaumburg Mr. and Mrs. Robert A. Hill Mr. and Mrs. and Mrs. Jay A. Matt White Cure ALS Mr. and Mrs. Joshua P. Ms. Carolyn Brown Mr. and Mrs. Craig Hindman Maher Foundation Newsome Ms. Donna Buchholz Mrs. Renee Hoff Mr. Mark Manetti Dr. Sheila M. McCullough Mr. and Mrs. James W. Nolan Bucks for Bob: Robert Dr. and Mrs. Donald Hoffman Mrs. Jean Markes Mr. and Mrs. Richard Padula Tomasello Family Fundraiser Mr. Kevin Hoffmeyer Mr. and Mrs. Roland Martel Les Turner ALS Foundation Annual Report 2013 Supporters

Mr. and Mrs. Craig Robert D. & Phyllis A. Jaffee Mr. Lee Vasilatos PWC Truist Katten Muchin Mataczynski Family Foundation Mr. Sridhar Vembu SAP Matching Gift Program Rosenman LLP Mr. Ronald Matusiak Mr. Don Rode Mr. Michael Vender The GE Foundation Keevan Sadock Design Mr. Andrew McDermott Mr. and Mrs. David Roemer Ms. Nikhil Verma Thomson Reuters Kids Portraits by Picasso Mr. William McDonagh Mr. Michael A. Rosinsky Mr. and Mrs. Richard A. Voell U.S. Cellular Kings Lanes, Lounge & Sports Mrs. Mary K. McDonald Mr. and Mrs. Edward Ross Mr. Robert von Goeben UBS Matching Gift Program Mr. Michael Kinyon Mr. and Mrs. Bruce McLagan Mr. and Mrs. Lawrence J. Mr. William Walker and United Way of Central Kohl Children’s Museum Mr. and Mrs. David McNair Rothman Mr. Ed Waenke Illinois, Inc. Kraft Foods - Customer Meelia Family Foundation Mr. William A. Rowe Mr. and Mrs. Joseph P. Weil United Way of Greater Service Department Melvoin Foundation Royal Die & Stamping Co. Dr. and Mrs. Jeffrey Wener Philadelphia & SNJ Mr. Robert Lee Mill Street Elementary School RTC Industries, Inc. William and Wilma Dooley United Way of Lake County Lettuce Entertain You Mr. and Mrs. Richard J. Mills Mr. Paul Ruby Foundation United Way of Metropolitan Enterprises, Inc. Mr. John Mitchell Mrs. Kathryn Ruffatti Mr. Michael Williams Chicago Dr. Jerome Lidsky Mr. and Mrs. Bob Moglia Mrs. Laurel A. Russo Mr. Brion Wise YourCause, LLC Mr. Michael Manternach Morris Weiser Family Ruzicka & Associates, Ltd Mr. Mitch Wolf Midwest Orthopaedics at Foundation Ms. Tracey Sachs Dr. Lisa Wolfe Gifts In Kind Rush, LLC Multitech Metal Forming Dr. and Mrs. Scott D. Mr. John C. Wooten abc7 Chicago Mr. James Mirabile Mr. Peter Murphy Sagerman Mr. and Mrs. Richard Worsek ABT Electronics, Inc. Museum of Contemporary Art National Philanthropic Trust Mr. and Mrs. Chris Schaeffer Mr. Jeffrey F. Youngman APEX Kitchen & Bath NBC 5 NCAA Charity Pool (Haley Ms. Gail Schaumann Ms. Karen Zelden Arlington Park Newberry Library Schechter) Mr. Joel Schechter and Zion Benton Township High Autobahn Country Club Northlight Theatre Mr. and Mrs. Christopher Ms. Bambi Jacoby School B & B Catering Company Ogilvy & Mather Chicago Niederman Mr. and Mrs. James W. Mr. Robert J. Zollars Bett’s & B2 Contemporary On Stage Day Spa Mr. and Mrs. Alfred Schmitt Blick Art Materials Pepsi Beverage Company Niederman Dr. and Mrs. Bradley Schnack Matching/Workplace Bob Chinn’s Crab House Perkins Coie LLP Mr. Brad Niederman Mr. and Mrs. William R. Abbott Laboratories Employee Boka Restaurant Group Mrs. Karen Perl Jacobson Nonna’s Garden Schnirring Giving Campaign Ms. Irene Boutzarelos Mrs. Jane Prikazsky Dr. and Mrs. Douglas R. Mr. David Schombert AbbVie Inc. Employee Giving Mr. Lin Brehmer Mr. Cliff Questel Norman Mr. Drew J. Scott Campaign Brookfield Zoo Ms. Barbara E. Quinn North Barrington School Mr. and Mrs. Gregg A. Searle Alliance Bernstein Ms. Eve Brownstone Razny Jewelers North Shore Treasures Semler Industries, Inc. Allstate Giving Campaign Chicago Architecture Ms. Yareli Rodriguez (Carson Stoga Ms. Lenore J. Sexton AON Foundation Foundation Ms. Holly Rotman-Zaid Communications) Mr. Kent Seymour AT&T United Way Employee Chicago Athletic Clubs Mrs. Laurel A. Russo Mr. Mark Oberrotman Seymour A. Cohen Family Giving Campaign Chicago Bulls Mr. Phil Schwarz Mr. and Mrs. Michael O’Hare Foundation Atomatic Mechanical Chicago Historical Society Sekou Productions Orange Hatters Mr. and Mrs. Larry Shanker Services, Inc. Chicago Marriott Oak Brook Sheraton Chicago O’Hare Mr. Danny O’Shaughnessy Mr. and Mrs. George V. Bank of America - Matching Chicago Marriott Suites Ms. Deb Silberstein Mr. and Mrs. Jeffrey S. Osisek Sherman Jr. Gift Program O’Hare The Center for Facial Plastic Mr. and Mrs. James J. Mr. John Sherriff Bank of America United Way Chicago White Sox Surgery O’Sullivan Mr. and Mrs. Jonathan M. Campaign Charities, Inc. The Denim Lounge Over the Top Short Baxter International Ms. Wendy J. Cohen The Fireplace Inn Mr. and Mrs. Steve Pangere Dr. Gerald Silverstein Foundation Corner Bakery The French Pastry School Ms. Joan A. Parker Ms. Julie Simak Cardinal Health Ms. Jenna Culliton The Ritz-Carlton Ms. Joan Parker Dr. and Mrs. William F. Cardinal Health Cuneo Mansion and Gardens The Victoria Resort Bed and Mrs. Carol Paust Simonds Foundation Inc. DeSoto House Breakfast Mr. Steven C. Pelke Ms. Kathryn J. Simonds Carmax Foundation DoubleTree Suites by Hilton Triangle Printers, Inc. Mr. Owen Pell Mr. Stephen Smith Chicago Tribune Foundation Hotel & Cenference Center Tribune Products Company Mr. and Mrs. Richard S. Dr. Ananya Spann Employee Matching Gifts East Bank Club Tru Pepper Ms. Pat Steffensmeier CNA Foundation Edwardo’s Pizza Restuarants Ultradent Products, Inc. Mr. and Mrs. Michael Perlow Mr. and Mrs. Ralph Stegall Community Health Charities Mr. Jonathan Eig US Foods Mr. Gary Peterson Mr. and Mrs. Avy Stein of Illinois Elgin Fresh Market Mr. Keith Van Horne Philips Respironics Mr. and Mrs. David A. Deutsche Bank Americas Mr. and Mrs. Richard Feffer Visographic PhRMA Sternbberg Foundation Ferrari-Carano Vinyards and Walgreens Option Care Mr. Frank Pisch Mrs. Charles Stinnett Discover Financial Services Winery WERV-95.9 The River Mr. Edward Pollner Ms. Amber Stork Give with Liberty First Bank of Highland Park Westin Chicago North Shore Potbelly Sandwich Works Mr. Bradley Strahorn Glotel French Country Inn Wines for Humanity Mr. and Mrs. Robert Pottle Mrs. Kathy Stupar Grainger Matching Charitable Mr. and Mrs. Harvey Gaffen WTMX- The Mix Principle Valuation LLC Ms. Kara Sylvester Gifts Program Gene Siskel Film Center Wyndham Lisle Chicago Hotel Mrs. Lisa Pritzker Synapse Biomedical, Inc. Heart of Florida United Glove Me Tender & Executive Meeting Center Mr. Denis Prosperi Dr. and Mrs. Frank S. Way, Inc. Gold Eagle Co. Zanies Comedy Nite Club Mr. Matt Pruitt Szatkowski Hollister Incorporated Gordon Salon Ms. Gayl S. Pyatt Ms. Marcy B. Teitelbaum Houghton Mifflin Matching Mrs. Helen Graeff Mr. and Mrs. Al Qahhaar The Connelly Family Gift Program Graziano’s Brick Oven Pizza Mr. and Mrs. Robert K. Quinn Foundation IBM Employee Services Center Mr. Matthew Griffith Every effort has been made to Ms. Janet Reali and The Coughlin Family IBM Retiree Charitable Mrs. Kim Griffith include all donors of $1,000 or Mr. Mitchell Cobey Thanksgiving Fund Campaign Ms. Kathy Hart more. We apologize if we have Ms. Karen Reckamp The Helping Hand Sales, Inc. Illinois Tool Works Inc. Hilton Chicago Northbrook made errors or omissions. Regina Bielkus MD, LLC The Keller Family Foundation Kirkland & Ellis Hotel Please contact us so we may Mr. Matthew Reilein The Private Bank Law Offices of Meyer Capel Hilton Rosemont Chicago correctly acknowledge your Mr. and Mrs. Dan Repetowski Ms. Valda Thomas LexisNexis O’Hare support in the future. ResMed Corp. Mr. Tony Thomas Macy’s Foundation Holiday Inn & Suites Chicago Resource Technology Thomas R. Toolis Living McDonald’s O’Hare/Rosemont Associates Trust Merchant Services Howl at the Moon Respir Tech Mr. and Mrs. John Thompson Microsoft Matching Gifts Illinois Nut & Candy Mr. and Mrs. Paul Revis Mr. and Mrs. Richard C. Program Illinois Sports Facilities Thank you! Richard and Dorothy Pandorf Tilghman Motorola Solutions Authority Foundation Todd A. Heller & Associates Foundation iO Dr. Susan Richardson and Mr. and Mrs. Alan Turner Network for Good Jewel-Osco Mr. Michael Richardson Ultradent Products, Inc. PepsiCo Foundation Employee John G. Shedd Aquarium Rio Grande Pacific United Seating & Giving Programs Johnny’s Kitchen & Tap Corporation Mobility LLC Pfizer Foundation Matching Mr. James W. Johnson Mr. David Utterberg Gifts Program Mrs. Caren Kaplan Leadership Les Turner ALS Foundation Annual Report 2013

Our Leadership

Board of Directors Administrative Staff Harvey Gaffen* Joel A. Schechter* Doug McConnell Wendy Abrams Judy Richman, RN, BSN President Vice President Management Director, Executive Director Patient and Family Advocate CEO, Private Client Group Attorney, Law Office of Vissant Capital Corporation RSM McGladrey, Inc., Joel A. Schechter Kim McIver Easton Stevenson, LCSW Retired Joshua P. Newsome Director of Athletic Events Patient and Family Advocate Deb Silberstein* Vice President, Ken Hoffman* Vice President Goldman Sachs Liz Melvin Julie Stowell, RN Executive Vice President President, Silber Screens, Inc. Director of Special Events Patient and Family Advocate Group President, Illinois Tool Joan A. Parker Works Inc. Thomas F. Boleky Consultant, Joan A. Parker Maria Brauer Independent Auditors Attorney, Beutel Hurst Government Affairs Development Manager BIK & Co., LLP Kenneth M. Crane* Boleky LLC Palatine, Illinois Vice President Mary Lou Pisone Jordyn Frick Partner, Perkins Coie LLP Matthew Brown Northwestern Mutual Marketing and Communications Affiliations Partner, Katten Muchin Financial Network – Manager Northwestern University Jim Derleth* Rosenman LLP McTigue Group, Retired Feinberg School of Medicine Vice President Deb Marron President, Sales and National John T. Culliton *Executive Committee Office and Human Resources Community Health Accounts, Excelsior Medical President, Global Solutions Manager Charities of Illinois Corporation Managing Director, Sourcing Honorary Board Strategies International LLC Norman Bobins Megan Gaffney International Alliance of William N. Haarlow, PhD* Monte Briner* Special Events Associate ALS/MND Associations Treasurer Robin Fern Mary Ann Childers Director of College- Manager of Strategic Dick Clark* Hannah Peltier Information is current as of Admission Relations and Alliances, water.org James V. Insolia* Communications Associate the printing of this annual Lecturer, American Studies Jay Levine report. Program, Northwestern Vicki Flahaven James W. Nolan Karen Gianni University Corporate Concierge, Harold Post* Office and Database Assistant Editorial: Concierge Unlimited Duane C. Quaini Maria Brauer Scott L. Heller, MD* International Ross Wolfson Health Professional Staff Vice President, Medical Services Shari Diamond, RN, BSN Design/Layout: Neurologist, Lakeshore Cindy Fluxgold *Deceased Director of Patient Services Ogilvy & Mather Chicago Neurology Partner, Goldstein, Fluxgold & Baron, PC Spokespersons Laurie B. Fieldman, MSW, Richard Hirsch* Lin Brehmer LCSW Vice President Bonny J. Gaffen Jonathan Eig Director of Social Services Vice President, Keith Van Horne Gold Eagle Co. David T. Hoppe Anne Lidsky, PhD President, Cors, Inc. Support Group Facilitator W. Scott Nehs* Vice President Bob Lee Ileane Mindel, RN Vice President, Deputy Owner, B. Lee Marketing Patient and Family Advocate General Counsel, Blue Cross Blue Shield Association

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Les Turner ALS Foundation 5550 W. Touhy Avenue, Suite 302 Skokie, IL 60077-3254 847 679 3254 lesturnerals.org

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