campaign BULLETIN Be part of the vision $5M Over $5 million raised during the Close the Gap Campaign April 2015 / No. 7 THANK YOU! The WFH gratefully acknowledges the more than 900 individuals and organizations who contributed to the Close the Gap Campaign 2012-2014. The community campaign raised an outstanding $1.9 million! $500,000 and more André de la Porte Family Foundation $250,000–$499,000 Hemophilia Center of Pennsylvania 340B Program Laureen A. Kelley $100,000 – $249,999 Association française des hémophiles* National Hemophilia Foundation (USA)* Novo Nordisk Haemophilia Foundation $50,000 – $99,999 Hemophilia Alliance Foundation Hemophilia of Georgia, Inc. $25,000 – $49,999 Biogen Idec Hemophilia Canadian Hemophilia Society* Eastern Pennsylvania Chapter Irish Haemophilia Society Ltd.* 1 anonymous donor $10,000 – $24,999 340B Factor Program at Akron Children’s HTC Baxter Healthcare Corporation Bayer HealthCare Patsy Carman Haemophilia Foundation Australia* Katharine Dormandy Trust LA Kelley Communications, Inc. The Skinner Family Ministère de la santé et des Services sociaux Opticom International Research AB Phillips 66 Lisa Sackuvich Stichting de Erven Leeuwenhart Swiss Hemophilia Society* $7,500 – $9,999 Haemophilia Foundation of New Zealand* 1 anonymous donor $5,000 – $7,499 Cascade Hemophilia Consortium Deutsche Hämophiliegesellschaft (Germany)* Héma-Québec Hemophilia Foundation of Michigan Scott and Kim Martin Mary M. Gooley Hemophilia Center John R. Taylor The Marketing Research Bureau, Inc. Barbara and Gerard Volk $2,500 – $4,999 Paula H. Bolton-Maggs and Benjamin Bolton-Maggs Canadian Blood Services Anthony K. Chan Colorado Chapter of the National Hemophilia Foundation CSL Limited (Australia) Cheryl and Tony D’Ambrosio Fundación de la Hemofilia (Argentina)* Assad Haffar Hemophilia Foundation of Greater Florida, Inc. Hemophilia of Iowa, Inc. Netherlands Haemophilia Society* Adam Newsome Norwegian Hemophilia Society* Elizabeth A. Paradis Glenn and Beatrice Pierce William T. Sparrow Swedish Hemophilia Society (FBIS)* Foundation for America’s Blood Centers 1 anonymous donor $1,000 – $2,499 Julia M. Alvarez and Alfred Hiermann John E. Bournas Ute Braun Mark Brooker The Capretto Family Paula Cobb Diagnostica Stago, Inc. (US) Nancy Flemming Florida Hemophilia Association Dietje Elisabeth Fransen van de Putte Haemophilia Association of Mauritius (HAM)* Haemophilia Foundation Victoria $145 Average cost to diagnose one person with a bleeding disorder Aris Hashim and Zaiwiah Zainuddin Hemophilia Foundation of Minnesota/Dakotas Japan Committee for People with Hemophilia Elizabeth Johnston Carol K. Kasper Nigel and Melissa Key Marion A. Koerper Phillip Kucab Philip and Susan Le Ron and Jenny Lees John Murphy Yasuharu Nishida Brian O’Mahony Shannon W. Penberthy Rocky Mountain Hemophilia & Bleeding Disorders Association Reynaldo and Rosario Sarmenta The Schnabel Family Claudia Schoenig-Diesing Dolly Shinhat-Ross David Silva Gómez Eric and Marion Stolte UK Haemophilia Society* Virginia Hemophilia Foundation Mary Q. Wingate 2 anonymous donors $750 – $999 Belgian Haemophilia Society* Wicher de Groot Egyptian Society of Hemophilia* Gavin Finkelstein John and Penny Gisselbeck Otieno Walter Mwanda Elizabeth Myles Kathleen Pratt Sol Ruiz Alok Srivastava Jerome Teitel Alain Weill $500 – $749 Association Libanaise de l’Hémophilie Jim and Margie Braden Gordon Clarke Jesse and Anne-Marie Dijkman Patricia A. Dominic Fondazione Angelo Bianchi Bonomi Donald and Barbara Goldman HAPLOS – Hemophilia Association of the Philippines for Love* Hemophilia of North Carolina Craig Kessler Barbara A. Konkle Jeanne Lusher, MD Shelly A. Mattson Randy Moore Österreichischen Hämophilie Gesellschaft (Austria) Arnoud Plat Man-Chiu Poon Joseph Pugliese Maria M. Salas Thomas Sannié Society for Inherited & Severe Blood Disorders (Trinidad & Tobago) The Poepjes Family Karen Tubridy Leonard A. Valentino Deon York 2 anonymous donors $250 – $499 Megan and Thomas Adediran Aiki Antonio J. Almeida Neva L. Anderson Axon-com Paula Bell David Blanchard Martin Boakye Francoise Boehlen Brothers Healthcare Patric Brown Ruth R. Brown Jens Bungardt Daniel Button John and Heather Button Margareth Castro Ozelo Rob Christie Gregory Christofi Antonietta Colavita Randall Curtis Czech Society of Hemophilia* Dan Doran Bjorn Drebing Jeanne Fellows Elena Galstian Cesar Garrido and Antonia Luque de Garrido Nicholas Goddard Barbara J. Gordon Haemophilia Foundation Australia Capital Territory Ann Harrington Oliver Hegener Hemophilia Association of Davao,Inc. Hemophilia Association of the Capital Area Vanessa Herrick Caroline and Pete Hultgren Scott S. Johnson Peter Jones Ashwin Kaushal Michael King Steve Kitchen Roshni Kulkarni David Lillicrap Hélène Lussier James Marshall Sally K. McAlister Harvey J. McCarter George D. McCoy Craig T. McEwen Marjorie and Ross McLimont Merck & Co., Inc. Robin and Kirk Myers Ellis Neufeld M.R. Nijziel Declan Noone Orthopaedic Hemophilia Treatment Center David Page and Patricia Stewart Greg Price Peter Pustoslemsek Margaret V. Ragni Marlene Ranz Allen and Amy Renz Paul W. Riley Bruce Ritchie Carlos Safadi Marquez Elianna Saidenberg Sam Schulman Pier Luigi Solimeno Angel Sosa Marlene Spencer Craig Arthur Steinke Alison M. Street Candace Terpstra Pamela and Brock Wilton Karen Wulff Yongqiang Zhao 6 anonymous donors $100 – $249 Maliheh Afzali Naeeni Akin Akinc Asociación Venezolana para la Hemofilia* Lili Aszodi-Fulop Theis Bacher Marianna Balakhnina $130,000 Largest single donation received in one year Geneviève Beauregard Thomas Becker Anacleto R. Benito Per Arne Berg Val D. Bias Rémi Boyer Sharri Brodie Paulina Campos Darin Carman Leigh Carpenter Ronald H. Cobb George J. Cornett CXG Danish Haemophilia Society* Piet de Kleijn Francine Décary Carol M. Dekernion Donna and William Dible Shelby L. Dietrich, MD Anne Duffy The Ellis Family John Emmerton Emmanuel Favaloro Federación de Hemofilia de la República Mexicana* Janel W. Feierabend Zev Fishman Angela L. Forsyth John G. Foster John Freedman Elmira Gadimova Karen Geney Joan C. Gill Anne Goodeve David Green Allison Greig Sally and Gary Griffiths Harriët Heijboer Hemophilia Foundation of Southern California Hemophilia of South Carolina Martin Heuer M. Silvija and Roger Hoag Christopher Hodgson Keith Hoots Hospital Infantil Pediatrico/ Hospital Escuela Dan Ignas Rose Jacobson Chi Shan Bonnie Kho Hee-Soon Kim Lily Kong Allan Kucab Dana Kuhn Edward Laane Blandine Lacroix Martin Lampacher Georg Lemm Jacopo Leonardi Claudia Leveque Silvia Linari Gabriel Lottaz Johnny N. Mahlangu Michael Makris Maria Manahan Ann Mancini Bernard Manson Gita Massey Tadashi Matsushita Eveline Pauline MauserBunschoten Nicolas Mayle Dora Ngum Shu Mbanya Anthony McCarthy Kieran D. McHugh Colleen McKay Carol McKenna Salomé Mekhuzla Richard J. Metz Anders Molander Paul E. Monahan Martha Monteros Rincón Paul Moorehead Kevin Moran Andreas Mueller-Beckhaus Kathy J. Mulder Sukesh C. Nair 2 new programs (Research Program and Cornerstone Initiative) introduced Alan Neaigus Marilyn Ness W. Warren Newman Beatrice Nolan Deborah Nosowsky Peter O’Malley Leslie C. Oygar Gianluigi Pasta Stephanie Pineda Lydia Pitcher Phillip R. Poovey Flor Loya Porragas Debbie Porter Nadège Pradines Lisa Sorkin Rabin Michel Raymond Eduardo Rey Michael Rose David Ross Jennifer Ross Timothy Ross Juan J. J. Rota Arrieta Dawn Rotellini Stephen Russell Catherine Sabourin Hiroyuki Saito Mathieu Sannié Isabel Santamaria Michael Schindelar Thomas Schindl Emily and Mark Schmidt Jack and Ann Schnabel Cynthia Secrest Rahajuningsih D. Setiabudy Mardelle Shagool Astrid Shapiro Abdulaziz A. Sherif Janet Sloan Sydney Smidt Robert Smith Sociedad Hondureña de Hemofilia* Janaki Sonoo Jayson Stoffman Stephanie Storey Marion and Charles Stuart Gary Sutherland Aliakbar Tchupan Christine Thomas Jackie Touzeau Ilia Tsiklin Edward G.D. Tuddenham Craig Upshaw Luis Uribe Cock Anita Vuksan Karen Wenderoff Tefu Weng Frederick Wensing Western Pennsylvania Chapter, NHF Jerzy Windyga Michelle Witkop Paula Zeff 13 anonymous donations $50 – $99 Bradley Andre Maria C. Arango Wendy Aronson Sulochana Badagabettu Judy A. Bagato Michael Barry Joan and John Bates Anne Becker Sébastien Bédard Paul Bedbrook Andy Blackledge Paul Bonner Ruud Bos Brian Boyer Uros Brezavscek Frédérica Y. Cassis Waveny Charles Arleigh R. Clemens Leo Copeland Cameron Corlett Mary Cousins Daniel Credazzi Helene H. Crown Lorraine De Smet Mylène D’Fana Lisa Dickson Catharine Dowis Shireen Du Preez Amy Dunn G. Duraisamy Michelle Dursun Evelyne Eggs Chapplis Nancy L. Erwin Clara Espinosa Aisha Fakeir Thelma Ferber Josh Ferguson Michael A. Fournel Sandy and William Fox Marc C. Fullington Elizabeth and Christopher Fung Laura García Changpo Daniel Anibal Garcia Diego Jennifer Garlinge Susanne Gillespie Grace Gilmore Catriona Gordon Marina Goruppi Kerry Grant Suzi Greer Arthur and Janet Haines Khalilullah Hamdard Ken Hatfield Lily Heijnen Hemophilia Association of the Philippines Inc. - Cebu Thomas Hendrickson Michael Hockey Melissa Hurtt David Inglis Robina E. Ingram-Rich Alfonso Iorio Marc Isler Mohd Zulhilmi Paiz Ismadi Esmaeil Jafari Araghi Paula Denise James Yuxin (Ellen) Jiang Cecilia Johnston Anita Julshamn Faye Katzman Kate Khair Stephen Kinsman Delin Kong Peter Kouides François Laroche Adrienne Lee Patricia Le-Fort James Lockley Catherine Manno Francine Ménard Shane Meotti Oscar J. Monteros Rincón Satomi Motojima Jose Antonio Munoz Puche Lisa Murphy Omar Naima Ann-Marie Nazzaro Patricia C. Neff Suzanne O’Callaghan Ogechi Ohadomere Marie-Anne Olivier Eva Olsen Galafteon G. Oltean Albert Orriols Lorena Padilha Marilyn Passer Douglas W. Pierce Stephen Price Rajiv K. Pruthi Sarah-Louise Quig Wendy Quinn Laura Quintas Doris Quon Moche Raz Guido Reber Judith Rees Eileen Regier 991 donors from 96 countries James P. Riddel Brenda Riske Soledad Rivero Hardo Patrick Robert Elaine Rock Julie Ronaldson Russell and Carol Rose Françoise Rossi Cynthia Rothschild Susan J. Russell Christoph Schmidt Victoria Schwager Jack Scott Shelley Shaw Chantakorn Shutidamrong Toby Simon Alan Skinner Mike Skinner Jonathan Spencer Janine Staunton MacGregor Steele Courtney Stevens John Stevens Linda L. Sulser Srilatha Tangada Sylvia Thomas Arthur R. Thompson Dawn L. Thorp Tomye Tierney Deirdre Tuck John Tuck Gary and Nola Unruh Sandra Vallin Antunes Ellen White Denise Wilson Sharyn Wishart Wing Yen Wong Cynthia Zamora Anabella Zavagno Claire Zellner 7 Anonymous donors $25 – $49 Fatmah K. Abdallah Manuela Albisetti Syed Ali AbdulKareem M. AlMomen Kagehiro Amano Favero Anicée Ana Antun Denise Armstrong Jacqueline Aubry Marilyn August Raul Aurelio Bordone Arafat Awajan Omolade Awodu Markus Bachhuber Natasha Barry Julie-Anne Bell Brad Benne Stephen Bennett Gary M. Benson Meltonian Blake Neil Boal Nellie Boot Evan Borstein Alicia Brard Florian Brassel Andrew Brewer David Brock Kai Broker Donald Brophy Cameron Brown Paulette Bryant Belinda Burnett Donald J. Button Andrés Campos Carlos Campos Sebastián Campos Robert T. Card Jodie Caris Jorge Carneiro Shannon Carpenter Marcus Carr Hervé Chambost Pratima Chowdary Natashia Coco Desiree Coen Herak Linda Cole Carly Conway Judi Cooper Stephanie Coulman Charlene Cowell Enrica Cristina Patrick Crowley Eric Cubberley Jon Davis Stephanie Devine Kimberly Ebsworth Winand Eerens Beryl Favaloro-Dawson Chad Feay Catharina Jacoba Fijnvandraat Kevin Fisher Neil Frick Katsuyuki Fukutake Ernestine Fuller Joanne Galati P.T. Woet Gianotten Aidee Gilbraltar Marc Gilgannon 25 Campaign volunteers Nicolas Giraud Peggy Glazzard Haemophilia Foundation of Nigeria* Fiona Hall Teresa Hall Vicky Hannemann Harlinda Haroen Jennifer Harris Michael Heim Hemophilia Society of Malaysia* Tanya Hill Ron Hoffman Joseph Hopcraft Nicola Hope Anne Hurlet Aleksandra Ilijin Shannon Jackson Kim Jacobsen Hans-Göran Jakobsson Lawrence Jardine William Jefferson Robert E. Johnson Janna M. Journeycake Susan Karp Suresh Katakkar Claudia D. Khayat Soon Ki Kim Bartholomew Kirby Vincent La Terza Audrey Ledru Tom Lee David Marshall Gabriele Martin Prasad Mathew Andrew B. Matthews Ann McCarthy Simon McRae Maia and Robert Meier Karla Bayer Mendonca Bonnie Mills Aldo Monteros Massimo Morfini April Morris Ian Muir Lochana Nanayakkara Annick Ndoumba Daniela Neme Theresa Ukmaka Nwagha Niamh O’Connell Cheryl Oenema David Oenema David Oleson Sandra C. Oliveira Martine Pennetier Genevieve Pietu Victor Manuel Ponce Rojas Nichakan Poolchai Jerry S. Powell Murielle Pradines Laura Primiani Sylvain Proulx Sanj Raut Bradley Rayner Laurel Reger Harold R. Roberts Marie Roemcke Laura Roldán Maria Serena Russo Christian Alejandro Sastre Loraine Sastre Richard Scott Ming Ching Shen Scott Shepherd Leslie Situ Ferber Slovenské Hemofilické Zdruzenie (Slovakia)* Leanne Stephenson Jean St-Louis Anthony Stowers Gustaf Strindevall Pavel V. Svirin Maryse Tamburro Yasuhito Tanaka Elizabeth Tawil Lisa Thilbeault Patrick Thomenius Prasanna Kumar Thummanahalli Subbanna Duc Tran Giuseppe Turchetti Marijke van den Berg Grace Vaz Bert Verbruggen Sudharma Vidyatilake Vietnam Hemophilia Association* Kyelle Jodi Virgil Annette von Drygalski Susanna von Oettingen Ahoefa Vovor Peter Vuksan Elaine Warner Alvaro Luiz Wolff Lyn Wong Hassan M Yaish John York Sounya Zerouali Baiba Ziemele 4 anonymous donors up to $24 Boumelit Abdelkadar Medini Abderrahim Ahmed Abdul Bari Sergio Acosta Deborah Adamkin Marian Ahlberg Rehab Al Bloushi Issa Ibn Abrahim Ali Sa’eed Alsuleimyyeh Premroop Alva Daniel Andrei Ruth Antonio Rafael Aparicio Karl Archibald Pablo Ardiles Maria Eugenia Arias Corona Raul Arita Auxume 107 Countries received support from the WFH in 2014 Association Marocaine des Hémophiles* Peter Aubry Patricia Avilva Tine Bacher Alice Banze Joy Barrett Selma Barry Dalia Bashari Diya Bassis Charles Bayl Obdulia Betancourt Ashish Bhattad Stephen L. Bland Beatriz Carla Boggia Tutaglio Amanda Bok Fayçal Bouabellou Donna Bradley Sam Bradley Per Arne Brånsgård Patrice Bravo Joanna Brodie Dustin Burseth Judy Butler Guillermo Campillo Daniel Caris Kahurangi Carter Michelle Cecil Maria A. Cedola Kim Yin Chew Sayun Chimpradit Manjit Chohan Collen Clark Robyn Coleman Justine Colonge Anne-Louise Cruickshank John Curran Matthew Dalgleish Sandra Davy Dania Eliza De La Llata Gómez Stephan T. de Waard Timothy Demos Bethanne Deuel Abdou Ramane Sambo Diallo Maryse Dien Linda Dockrill Roya Dolatkhah Ines Duque Acosta Pierre Durgaram Robyn Edwards Passeri Emilio Valter María Enriquez Barbara Faganel Kodjik Maria Felix Chris Fennicks Caroline Ferguson Patrick Finders-Binje Sarah Ford Tony Frisk Kikue Fujii Teruhisa Fujii Ricardo Carlos Gaitán Fitch Mukesh Garodia Guilherme Genovez Jean-François Giard Julie Gibson Adrian Pilar Gil Abeer Gilda Edwin Goh José Manuel Gomez Duarte Evelyn Grimberg Kyme Groller Gladys Guberrez Elvira Guillen Ameeta Gupta Craig Haran Steffen Hartwig Ahmad Hazri Hashim Sarah Hawk Maureen Hayes Sabine I. Heine Julie and Paul Heinrich Ana Lilia Hernandez Pablo Hernandez Tere Hernandez Patricio Manuel Hidalgo Dillon Jessica Hirst Michale Ho Barbara Hodges Grant Hook Sean Hubbert Tomoyuki Igawa Masataka Inoue Susan Inwood Lisbeth Skjødt Ipsen Miguel Izquierdo Franco Jack Jefferson M. Joseph John Alexandra Johnson Klemens Kaserer James Kennedy Zlatko Kerken Romanoz Khomasuridze Agnes Kisakye Takehisa Kitazawa Walid Kobisi Chafik Kouache Kristijan Krajacic M.J.H.A. Kruip Ilmar Kruis Seth Kuhlman Thomas Lammers Moran Heidi Lane Heather Lauder Oswaldo Lazala Martin L. Lee Peter Lindholm Kristina Linnér Swenson Anders Lönegård Paul Long David Loveless Ines Lugo Johan Lundström Martha Stella Madrid Betancourt Anne Mäkipernaa Sebastian Maranga Alessandro Marchello Bertrand Marchiaro Maribeth Marquard Ingrid Mårtenzon Malik Masood Fareed Rema Mathew Simbarashe Maziveyi Sibongile Frieda Mbele Carl McKay Shannon Meeks Luis Melgar Araúz Zavier Meotti Alicia Mercado Margaret Melda Michael Richard Minja Leonard Minty Raissi Mohamed Taoufik Benigno Montenegro Reyer Catriona Moriarty Marianne Mosling Diane Munro Esther Muntu Sarkuna Devi Murugasan Hiroshi Nakashima 778 First-time donors Shan N. Narayanan Rasheed Nasr Carol Nave David Naveh Ronnie Nelson Megi Neziri Hanh Ngo Lauren Nyhan Tania Maria Onzi Pietrobelli Manuel Santiago Ordoñez Bastidas Eadaoin O’Shea Lisa Padilha Paresh P. Parmar Linda Parry Leanne Pearce Jorge Peña Siado Charity Pikiti Jane Pittadaki Vince Poma Bishesh Poudyal the late David Pouliot Sarah Preston Rosana Quinteros Indrawattee Rampaul Joan and Arvin Randle Carol Reddie Emilie Rehel Rosalie Reiri Sheikh Moin Riaz Erl Roberts Sergio Robledo Barbara Rodgers Fernando Rodriguez Chappell Yadira Rojas Marcano Gert Rudolf Tobias Ruhl James E. Rwehabwra Aislin Ryan Naouel Salhi Andrea Sambo John Francis Sarmenta Maria Satti Uwe Schlenkrich John Schmitke Delphine Schwartzmann Lynley Scott Kibet Shikuku Naja Skouw-Rasmussen Egidijus Sliauzys Pamela Smith Stephanie Smith Debbie Snavely Chean Sophal Ana Carolina Sotillo Henry Steenkamp Theresa Stevens Kristen M. Stewart Patience Stirling Jeff S. Stonebraker Ari Antonius Sudana Ekawat Suwantaroj Te Whainoa Te Wiata Virginie Terrier Patrice Thomas Rachel Tiktinsky Anna Tollwe Ahmadou Toure Zorica Trajkova Antevska Fendi Antonio Valdez Bisono Minette Van der Ven Ingrid Van Steenberge Aart van Wingerden Jean-Noel Vernanchet Kjersti Viken Luz Graciela Villalaz Garcia Jacoba von Wielligh Hemirau Waretini Doris Wee Victor Wendel Gamini Wickramasinghe Nathan Wilkes Sonji Wilkes Mayda Tamara Yasychyn Romero Ray Yu A.B.M. Yunus Lukas Zahrer Mowcef Ziani Sidki Zouhair Bulent Zulfikar Gabriele and Karl Zwiauer 4 anonymous donors Bold: The WFH is especially grateful to supporters who contributed to each year of the campaign. *The WFH is proud to acknowledge the support of our national member organization. Every effort has been made to ensure to accuracy of this list. Please contact us with any errors at acolavita@wfh.org Close the Gap campaign 2012-2014 Co-Chairs Jan Willem André de la Porte, WFH patron Alain Weill, WFH president Honorary Campaign Committee members representing WFH past presidents Frank Schnabel, WFH president 1963-1987 Frank Schnabel, III Gina Schnabel Marie-France VanDamme Charles Carman, WFH president, 1988-1993 Patsy Carman Brian O’Mahony, WFH president, 1994-2004 Mark W. Skinner, WFH president, 2004-2012 REGIONAL CO-CHAIRS Americas Patricia Dominic, U.S.A. Cesar Garrido, Venezuela Phil Kucab, U.S.A. Martha Monteros Rincón, Mexico Carlos Safadi Márquez, Argentina Pam Wilton, Canada Europe Anne Duffy, Ireland Middle East & Africa Megan Adediran, Nigeria Magdy El Ekiaby, Egypt Johnny Mahlangu, South Africa Bradley Rayner, South Africa Aliakbar Tchupan, Iran Asia & Western Pacific Gavin Finkelstein, Australia Aris Hashim, Malaysia Reynaldo Sarmenta, Philippines Fund & Resource Development Committee Chair Deon York Eric Stolte 2008-2012 50th Anniversary Honorary Committee Baxter Bayer Biogen Idec Hemophilia Biotest BPL CSL Behring Green Cross Grifols Kedrion LFB Novo Nordisk Pfizer Sanquin The WFH is grateful to our corporate partners for their support of the WFH 50th anniversary. Contributions to the WFH can be made on an ongoing basis www.wfh.org/donate