The work of the Fibrous Dysplasia Foundation is made possible by the volunteer efforts of many people and financial and in-kind contributions from many sources. We thank the individuals and corporations below for their generosity.
The generosity, leadership and kindness of our donors is beyond comparison. Of the 2,000+ donors who gave to the FD Foundation in 2019, special thanks are due to:
The Fibrous Dysplasia Foundation is grateful to our 2019 sponsors. You are helping make a better tomorrow for people living with FD/MAS.
2019 Donor Hall of Fame
Mr. & Mrs. Tim Barnicle, Mr. Mark Beaudoin, Ms. Edith Brandt, Dr. & Ms. Justin Cohen, The Colton Family, Mr. & Mrs. Christopher Delong, Ms. Donna Disend, Tracey and Bob Early, Fred and Cindi Brandt Levin, Mr. & Mrs. Harry Harles, Ms. Heather Hazel, Justin and Sarah Healy, Bill and Suzie Indresano, James Keeling, Mr. & Mrs. Robert Lee, Troi and Michael Lefkowitz, Mr. Marc Levin, Brad and Allison Levin, Mark and Rachel Lipschutz, Mr. & Mrs. Patrick Litre, Dr. and Mrs. Donald Miller, Mr. Phillip Raskin, Kim Indresano and Brian Romer, Mr. & Mrs. Ziv Rozenblum, Mr. & Mrs. Paul St. Romain, The Woll-Yellin Family, Ms. Lynda Weatherby, and Mr. David Williams
2019 Volunteer Hall of Fame
Year after year, the remarkable and extraordinary efforts of the Board of Directors, Medical Advisory Council and Scientific Advisory Council allow the FD Foundation to make an outsized impact for people living with FD/MAS.
We are also grateful to Becky Halkias and Tim Barnicle for volunteering their time and expertise to our Advocacy efforts, and to Kevin McBride for his technical assistance.
Special recognition in 2019 is also due to the many individuals who serve as oversite for the FD/MAS Patient Registry:
Steering Committee Members: Kiran Murty, Amanda Konradi, Alison Boyce, Andrea Burke, Cindi Brandt Levin, Lisa Heral, and Petra U. Special thanks also to Brittany Andersen for volunteering her time and energy.
Thanks to other volunteers who have asked not to be named, including the phenomenal volunteer who helped us with researching contact information for clinical experts.
Constellation Award Winners
The Constellation Award was created by the Fibrous Dysplasia Foundation to honor the stars who have made and who continue to make great contributions to enable the FD Foundation to fulfill its mission. The Foundation exists to provide information, advocacy and support to patients, medical professionals and the general public, and promote research for diagnosis, treatment and a cure for Fibrous Dysplasia (FD), McCune-Albright Syndrome (MAS), cherubism, and related diseases.
2006 – Dr. Michael T. Collins, NIDCR Craniofacial and Skeletal Diseases Branch, and head of was the Skeletal Clinical Studies Unit, began working in NIDCR in 1996 and, together with other members of the branch, established a series of clinical protocols for the study and treatment of fibrous dysplasia (FD) and the McCune-Albright Syndrome (MAS). These protocols were the first of their kind, not only for NIDCR, but also for the NIH Clinical Center. Dr. Collins past and present research not only provides basic understanding of the pathophysiology of these diseases, but generates evidence-based guidelines for the evaluation and treatment of patients with these conditions. Dr. Collins has generously served as a nonvoting member of the FD Foundation Board of Directors since its incorporation. Dr. Collins was selected as the first recipient of the Constellation Award from the Fibrous Dysplasia Foundation in recognition of the contributions he made to the care and well-being of people with FD and MAS.
2008 – Charlene Waldman, Executive Director of the Paget Foundation, has openly shared her expertise in operating a medically focused non-profit organization and has many times drawn the Fibrous Dysplasia Foundation and other smaller organizations into larger efforts, such as the Rare Bone Coalition of the Bone and Joint Decade. She is dedicated to patient advocacy and for this we are eternally grateful.
2008 – Fred Singer, Director of the Endocrine/Bone Disease Program at the John Wayne Cancer Institute in Santa Monica, CA and clinical professor of medicine at the Geffen School of Medicine at UCLA has been a supporter of the FD Foundation since its beginning. He has generously served on the board of directors, fielded many requests for information, presented research to patients and was instrumental in securing a site for the 2006 Patient-Family Meetings in Santa Monica. Fred is truly dedicated to improving patient’s access to care and for this we honor him.
2008 – OrthoPediatrics, Corp. of Warsaw, Indiana, founded by Nick Deeter has partnered with the Fibrous Dysplasia Foundation to understand the special orthorpedic needs of children with Fibrous Dysplasia. OrthoPediatrics has been very generous in sharing the contacts they have made due to their leadership’s extensive orthopedics background in order to help further the mission of the FD Foundation and provided extensive assistance with rebuilding the FD Foundation website.
2010 – Pamela G. Robey, PhD., Chief of the Craniofacial and Skeletal Disease Branch, is a distinguished researcher with interest in defining the biological properties of post-natal stem cells, with a particular emphasis on isolating the role they play in skeletal diseases like FD/MAS. Dr. Robey has worked tirelessly over several decades to decode the pathogenesis of FD/MAS, and has played an instrumental role in discovering many of the central findings in the field of FD/MAS basic research. Dr. Robey has always been very generous with her time, and shared overviews of the field of research at multiple Patient and Family Conferences.
2010 – Arabella Leet was a pediatric orthopedic surgeon and a highly accomplished physician. She researched and published extensively on fibrous dysplasia before her sudden passing in late 2013. She is dearly missed by her colleagues, patients and family.
2016 – Charles Harles co-founded the Fibrous Dysplasia Foundation in 2004, and served as its President through 2015. Without Charlie, the Foundation probably would not exist today. Over his 11 years of leadership, the FD Foundation helped hundreds of people through Patient and Family Conferences, and helped countless more through fibrousdysplasia.org. The FD Foundation launched and grew its Physician Database. The FD Foundation gave small strategic grants to researchers that supported research on bone-grafting surgery, mouse models, and more. Charlie was deeply personally involved in responding to messages from patients and families for all the years he served as President. He volunteered unbelievable hours to organize Patient and Family Conferences, as well as the first ever International Scientific Conference on FD/MAS and cherubism. He did all of that with a warm and generous spirit, which inspired all those he worked with.
2017 – Alison Boyce, MD is an endocrinologist and one of the lead investigators of the ongoing natural history study of FD/MAS at the NIH. She has a particular focus on pediatric care and has published extensively on the subject. Dr. Boyce’s diligence and compassion have helped so many patients. At any hour of the day, the 200 patients enrolled in the NIH study know that they can turn to Dr. Boyce in in moments of fear or uncertainty. The FD/MAS patient community is so grateful for the time that Dr. Boyce gives.
2019 – Robert Stanton, MD is an expert in general pediatric orthopedics, including fracture management, as well as the specialized areas of scoliosis management and benign and malignant musculoskeletal tumors. Since joining Nemours in 1987, Dr. Stanton has served as an attending orthopedic surgeon at the Nemours/Alfred I.duPont Hospital for Children in Wilmington, DE, and surgeon-in-chief and chief of pediatric orthopedics at Nemours Children’s Specialty Care in Pensacola, FL. Dr. Stanton is renowned for his work with the FD community and has graciously shared his skills and insights with the FDF and fellow FD/MAS researchers for over a decade.