Spitzi Barnicle, is a RN,wife, and mother to boy-girl twins and a young girl newly diagnosed with MAS. She lives in Portland, Oregon. Her interest is to gather support for research efforts geared toward finding better treatments and a cure for FD/MAS/Cherubism.
Catherine Calhoun, J.D. lives in Saint Francisville, Louisiana with her husband and two children. Her youngest child, a son, has McCune-Albright Syndrome. Catherine maintains the foundation’s physician referral database. Her primary interests are patient advocacy, collaboration and working with Lisa Heral and others to build a registry with repository for fibrous dysplasia and related conditions. In addition to her work with the Fibrous Dysplasia Foundation, Catherine volunteers with the MAGIC Foundation and Children’s Rare Disease Network/Global Genes Project, as well as, local parent advocacy groups.
Mary Clements lives in Long Beach, California where she raised a now adult son with Fibrous Dysplasia. He has participated in NIH research through his life and together they have been very active with bone research groups.
Jen Coleman lives in Midland, Michigan where she is raising a preteen son with Fibrous Dysplasia and McCune-Albright Syndrome. Jen created the successful Tri-City Kids’ Triathlon as a fundraiser for the FD Foundation. Jen is a 1991 graduate of the US Naval Academy.
Charles Harles, J.D. lives in Washington, D.C. He has McCune-Albright Syndrome and FD. Charles (Charlie) works on public policy issues relating to employment for persons with disabilities. He has participated in NIH research on FD since 1999 and is a founding member and the current President of the FD Foundation.
Lisa Heral, R.N., lives in Ft. Wayne, Indiana. She is a nurse and mother of two boys, the younger of which has monostotic Fibrous Dysplasia in the maxilla. Lisa is concerned about parents’ ability to make informed choices about their children’s healthcare. Lisa is leading the effort to establish a patient registry / bio-repository.
Dan Levine lives in Parnassus, New Jersey. He is the parent of a teenage son with Fibrous Dysplasia. Dan’s son has participated in NIH research through his life. Despite a severe case of FD Dan’s son has been very active in various wheelchair sports, competing internationally. Dan is a creative director with a marketing/communications firm in New York City and led initial development of the Foundations’ web page. Dan is Vice President of the FD Foundation.
Amanda Konradi, Ph.D. lives in Baltimore, Maryland with her husband and two children, where she teaches sociology courses at Loyola University. She, three siblings, and her daughter have Cherubism. They have participated in studies to describe the disease, to find its genetic marker, and to understand its immunological aspects. Amanda is concerned with educating patients and parents so they can assert themselves with medical personnel and educators and with helping affected children find ways to experience themselves positively. Amanda is Secretary of FD Foundation and its webmaster.
James Rae lives in Denver, Colorado. He has McCune-Albright Syndrome and Fibrous Dysplasia and has participated in NIH research on FD. James is a Certified Public Accountant (CPA) whose areas of focus include not-for-profit organizations. James is concerned with developing the Foundation’s ability to educate first line medical practitioners – GPS, pediatricians, and internists – about the disease. He is Treasurer of FD Foundation.
Frederick Singer, M.D. lives in southern California. He is Director of the Endocrine/Bone Disease Program at the John Wayne Cancer Institute in Santa Monica, CA and is clinical professor of medicine at the Geffen School of Medicine at UCLA. He is a past chairman of the Board of Directors of The Paget Foundation and a past president of the American Society for Bone and Mineral Research. He has a long term interest in disorders of the skeleton.
Thomas Todd (TT) lives in Grayslake, IL and is a Director for PerspecSys, Inc. He and his wife, Liz, are parents of a son diagnosed with FD. TT is focused on assisting in foundation strategy and funding efforts.
Michael T. Collins, MD is an endocrinologist whose area of specialty is metabolic bone diseases and mineral metabolism. He is the Chief of the Skeletal Clinical Studies Unit of Craniofacial and Skeletal Diseases Branch at the National Institutes of Health in Bethesda, MD. The primary focus of his research is polyostotic Fibrous Dysplasia (PFD) and the McCune-Albright syndrome (MAS). He is the principal investigator on several clinical studies of patients with PFD/MAS, and as chair of the Medical Advisory Committee is a non-voting member of the Board of Directors.
INTERNATIONAL LIASONS
Ann Underhill is a British citizen with FD living in Chandler’s Ford, England. She is retired. She was an IBM as programmer and planner. In 2007, Ann helped coordinate the first Fibrous Dysplasia patient conference in Britain and form the first FD organization (FDSSUK): www.fdssuk.org.uk
Kevin Bittlestone, Current Chair of FDSSUK: www.fdssuk.org.uk
