2013 Annual Donor Report Thank you for your partnership and support during the past year! Gifts to Membership, Research and Education $100,000 + William R. Lewis, III, M.D. Mohammad Ehteshami Duncan & Dr. William R. Lewis, Sr. Virginia & William Michael Christopher S. Eklund Michelle & David Mackay Josephine Morrison FSHD Global Research Foundation Susan Nordeen The Geraldi Norton Foundation $50,000 - 99,999 Edward Norris, M.D. Eugene & Emily Grant Delta Railroad Construction, Inc. Jane & Paul Rittmaster Monica Herzberg Grand Rapids Community Marsha & Jerry Seslowe William Herzberg & Judy Marantz- Foundation Erin & Clint Shack Herzberg Ida Laurello Pauli Overdorff & Allan C. Helen Klaben Kahn S & L Marx Foundation Silverstein, D.D.S. Robert & Cathy Kahn New York Community Trust Dr. Gracia Toubia-Stucky Tonia Kalleward $10,000 - 49,999 Helen & Marc Younger Paul & Stacey Laurello Adveq Management AG David & Nancy Lokerson $5,000 - 9,999 Anonymous Mindy Mackenzie AFM - French Muscular Dystrophy Sanford Batkin Sonia & Paul Norman Association Barbara & James Chin, Sr. Petro Capital Advisors Lesley & Mark Baynes William J. Conners III and Barbara Quest Diagnostics, Inc. Amy Bekier & Alan Schreer S. Conners Charitable Foundation Regeneron Pharmaceuticals, Inc. Paula Birnbaum & Neil Solomon Michael Finkelstein & Sue-ann Richards Family Charitable Trust Peter H. Catterall & Kim Toskey Friedman Elysa & Robert Roskam Combined Federal Campaign FSHD Canada Foundation Beverly & Mike Rowlett National Capital Area - Global Goldman, Sachs & Co. Joan & Alan Safir Impact Leslie & Roslyn Goldstein Judith & Kenneth Seslowe Community Foundation of Abilene Foundation The Herbert & Nell Singer Grace Corradino & Brian Kerr Kay Kitagawa & Andy Johnson-Laird Foundation, Inc. CPMAK Investments Stuart Lai Howard Solomon Joseph Drown Foundation Largotex Resources, LLC Madeline & Dr. Lawrence Weinstein Page 2 2013 Annual Donor Report The Power of Many We were very, very fortunate to get TOGETHER WE ARE LEADING THE WAY TO TREATMENTS AND A BRIGHTER FUTURE support from the FSH Society in the form ‘‘of a postdoctoral fellowship back in the Dear Friends, With this Annual Donor Report, you will notice something dark ages when nobody else was different: our new FSH Society logo. We kept the crimson color to preserve continuity as we move from the past into the future. funding research on DUX4. A flaming torch slashes across the bold capital letters, signifying how we have shed light into the black box that was FSHD and —Michael KYBA, PHD. also how the FSH Society, all of us together, is leading the way ’’ towards treatments and a cure. The torch also represents the act of becoming visible, standing up to be counted. Many of you experience isolation not Gifts to Membership, Research & Education due simply to the rarity of FSHD, but also to the understandable desire to keep quiet about having this disease. Your friends and $1,000 - 4,999 Daniel A. & Carole Burack colleagues may not even be aware that you have FSHD. 5L Properties, Inc. Donald Burke But as our Annual Donor Report clearly shows, many of you Virginia Aaron Cape Air/Nantucket Airlines are using the power of your donations to make a lot of noise! Your Abilene Dental/Hatchet Real Howard Chabner & Michele gifts, large and small, are adding up and changing the world. Estate DeSha Thanks to you, we saw the first published high-throughput drug screening study. Your dollars greased the gears of Access Medical William B. Cheek sophisticated robots that squirted thousands of compounds onto Benoit Allaire & Lyne Chalut Chemplex Advanced Materials microscopic clumps of DUX4-expressing cells. One of these Linda & Earle Altman Clesteen A. Clark could be the first new drug to fight the progression of FSHD. Anderson Perforating Services Bruce Clinton Thanks to you, researchers are making rapid progress on new Anonymous Coastal Sun Self Storage “FSHD mice,” on methods to silence the expression of FSHD Estate of Andra Jo Worcester Arlene & Dr. Gary Cohen genes, and on critically important tools for clinical trials, while Jeffrey & Barbara Bache Stuart & Harriet Cohen continuing to push the frontiers of the science of FSHD. Bradley & Sally Bagshaw Mike Connolly And thanks to you, no patient need face this disease alone. Joseph Barton Elizabeth & Joe Conron Just contact the Society and we’ll connect you with others living Basic Energy Services Cowboy Pump & Supply with FSHD. Margaret Bath Douglas & Elizabeth Craig This Annual Donor Report is a testament to the power of our Battle Creek Community Thomas Dempsey community. We deeply appreciate all those who supported the Society in 2013. And we hope to see your name on our 2014 Foundation Betsy & Robert Detwiler Annual Donor Report! Benevity American Online Rosalind Devon You can help ensure that we continue with our rapid progress Giving Fund Charles Duncan by renewing your membership or by making a gift today. You Ronald Bentley & Salvatore David G. Dvorak may use the enclosed envelope or give online at http://www. Larosa Eastern Bank Charitable fshsociety.org. Judy & Howard Berkowitz Foundation Thank you so much for your generous support and for Jamie Bernstein Susan Egert & Bill Milling keeping the flame lit. Carol S. Birnbaum, M.D. William & Rise Egert Blake Fulenwider Dodge Kate & Scott Eichel With very best wishes, Merrill Block Robin & Betty Ettinger Marlane Bozzi Judith & Sam Eyde Stephen & Jane Bradford Maureen, Rich & Liam Eye Louis & Ruth Brause Fawcett Family Jean & Kenneth Bridges The Curtis Finlay Foundation, Jill Cowherd & David Browning Inc. June Kinoshita Executive Director Page 3 2013 Annual Donor Report Gifts to Membership, Research and Education Finley & Runyan, LLP Mark & Deborah Jacoby Miers Capital Management Jacqueline Savoy & Jack First Financial Bank James Jenness Roger Miles Ramsey Joel & Jacalyn Florin Jewish Community Foundation Stanford Miller Betty Schechter Suzanne & Jerry Flower Scott Jones Mills Iron Works, Inc. Jay F. Schechter, M.D. J. J. Francis Stephanie & William Joseph Timothy Mobsby Peter Schweitzer John Freedman Harold & Sue Ellen Karp Monsanto Fund Shack Energy Services Margot & Norman Freedman Joanne & Alan P. Kassan Nancy & James Montgomery Ann Shafer Susan & Mitch Freedman Kellogg Foundation Grant Jennifer Moore Susan & Matthew Shattock Michael & Sharon Freudenstein Services Miles Moore Paul & Susan Shay Friends of FSH Research Catherine Devine & Timothy Morgan Stanley Susan Shay Jeremy & Lisa Gans Kerrigan Arik Motskin Theodore P. & Mary Jo Shen Carlos & Beatriz Garcia Kevin Kirby Polly & Marlin Murdoch Silberstein Foundation, Inc. Myriam & Carlos Garcia Abigail & Robert Kirsch Whit Myers Simpson Land Management Genzyme Corporation Ronald Koenig Jai & Jennifer Narayan LLC Jessica Levy & Jeremy Thomas Kohlberg Janet A. Narayan Taryn Smith Gitelman Lee F. Kolakowski, Sr Richard Nelson Jamie & Blake Snider Leonard & Linda Goldberg Ruth & Daniel Krasner Ruth & Dr. Marc Newberg Judy & Dr. Robert Soley Sunny & Bradley Goldberg Marilyn & Dr. Neil Kutin Tommy Noble Southwest Gas Systems Robert & Valerie Goldfein Michele & Gary Langer Lynn & Matthew O’Meara Jonelle Spicer Barbara & Michael Goodman Sidney & Ruth Lapidus Martin & Suzanne Victor & Susan St. Amand Susan & Edward Greenberg Kim & C. Larry Laurello, Jr. Oppenheimer Barbara & Herbert St. Lifer Roman Greene Lisa & Michael Leffell Susan & Eric Opsahl Linda & Kevin Stapleton Robyn & Timothy Gulstrom Leiden University Medical Virginia Padberg Monti Staton Michelle & David Halley Center Lisa & Tony Palmer Barbara & Robert Steele Jr Ellen Hannan Laurence & Stephanie Levy Barbara & William Parfet Christopher & Ellen Stenmon David Hardaway William Levy Linda & Tim Passon Ronda Stryker Glenn & Petrina Hasman Harry & Pamela Lewis Michael Penwell Nancy & Jerry Tarnoff Health Care Service Arthur & Susan Lindenauer Charles Perez Teal Energy Services Inc. Corporation Charitable Trust Lawrence & Agnes Liptak Daniel Paul & Susan Perez Don Tidwell Sandra & Michael Hecht Stacy Long Daniel & Stacey Philips Bonnie & Daniel Tisch David Cohen & Susan Hecht Hannah & Edward Low Dr. & Mrs. Ron Phillips Shelia & Chad Townson Ephraim & Karen Heller Cindy & Eric Lowrey Joel & Joan Picket Michelle & Christopher Tracy Betty Himmel William A. Maclean Susan, Stefano & Nicholas Doris L. & Henry Walter William & Elisa Hirschberg Andrew Mahoney Pogany Philip & Gail Wang Robert & Sarita Hixon Azia O Mahoubi Yvonne & Leslie Pollack Bettina & Spencer Waxman Michal Hobel Linda Lou Markham Andrew & Andrea Potash Max Weintraub Christine Hoene Harris & Felicia Markhoff Quail Well Service, Inc. Kim Small & Norm Wesley Gregg & Laura Hollander Bonnie J. Colombo & Joseph Z. Susan Rice Whil Research Foundation James Hoski Marnikovic David Rosenberg Judith & Roger Widmann Robert Humphreys, Jr. Virginia & Charles Maxwell Emily & Dr. Alan Rosenfeld Colleen & Glenn Wing Betty & Col. Robert Humphreys, McCarty Equipment Allison & David Sachs Susan & Benjamin Winter Sr. Christine & Conway McDanald Beverly & Buford Salters Aileen & Ken Wyckoff IBM Employee Services Center Merck Partnership for Giving Jane Sapery David Younger & Debbie Jed P. & Susan Isaacs Ellen & Lee Metzendorf George & Patricia Sarner Radzinsky Page 4 2013 Annual Donor Report Gifts to Membership, Research and Education $500 - 999 Edward & Ellen Davidowitz Valerie & Robert Karam Robert & Madelyn Rae Riggan Melissa Katz & Mike Zegers Alger Candlelight Giving Program Thomas A. & Diana M. Dee, Jr. Stanley & Linda Kaye Stephen J. Riker & Margery Baker Diane