In 1997, Steve Hobelheinrich founded a listserve to bring together persons affected by fibrous dysplasia (FD), their caretakers and partners, and medical professionals. He was motivated by the lack of information available when his 13-year-old daughter was diagnosed with this rare disease. Steve’s effort clearly met a need as individuals affected by FD, McCune-Albright Syndrome (MAS) and Cherubism, and a variety of medical specialists immediately registered on Fibrous Dysplasia Support On-Line (FDSOL).
Charles Harles (Charlie) discovered the site and immediately became an active participant. He partnered with Steve to improve the site. In 1999, as his daughter’s medical needs increased, Steve became unable to manage the list and Charlie assumed responsibility.
Working with Dr. Michael Collins at NIH, and a handful of other dedicated people with FD, Charlie began efforts to connect people from the list and those in the study at NIH by holding informal gatherings. These soon developed into more formal meetings that afforded everyone the opportunity to learn more about FD and to meet others who had this rare condition. For most, this was the first time they had met someone with FD.
At one of the early meetings, a small group gathered at the Harles’ house and determined that a formal organization would better serve those with FD. It was envisioned that it would promote connections between families and individuals with FD; it would promote the spread of accurate up-to-date information on FD to medical professionals, and it would promote research opportunities. Charlie worked in partnership with Wendy Daubel of Spokane, WA, and Dr. Michael Collins to draw individuals with FD, medical professionals, a formal operating structure, and funding together to establish the Fibrous Dysplasia Foundation.
The Fibrous Dysplasia Foundation incorporated in Florida in June 2004 and in July, the volunteer Board of Directors increased to eight individuals. In October 2005 the FD Foundation received confirmation of its tax-exempt charitable status under Section 501(c) (3) of the Internal Revenue Code.
As per our bylaws, the mission of the Fibrous Dysplasia Foundation is to:
- Promote mutual support through support groups and networking opportunities
- Promote increased awareness, knowledge and understanding about fibrous dysplasia (FD), McCune-Albright syndrome (MAS), cherubism and other related diseases among medical professionals.
- Fund and encourage research into treatments and a cure for FD, MAS, cherubism and related diseases; and
- Develop and provide information and referrals for
- people with FD, MAS, cherubism and related diseases and their families
- medical professionals
- other care providers.
The mission of the Fibrous Dysplasia Foundation is carried out by volunteers across the nation who FD, MAS, and Cherubism, or care for someone affected by these conditions, under the direction of the Board of Directors. Board members are drawn from the general membership of the foundation and include accountants, teachers, lawyers, medical workers, primary parents, truck drivers, and marketing specialists who are committed to making our mission a reality.
The Medical Advisory Council assists the board by reviewing FD Foundation publications and helping establish research goals. This diverse advisory body includes doctors and researchers who are experts from around the world for these rare diseases.
The Scientific Advisory Council is made up of medical clinicians and researchers with knowledge of skeletal disease and good scientific practice in the investigation of complex multi-system/endocrine-related rare disease. Members will assist the Board of Directors in
- Setting the parameters for a patient registry/bio-repository and establishing the best ethical practices in the handling of patient data.
- Advise the foundation on future directions for research and participate in the creation of requests for proposals.
- Evaluate proposals submitted to the FD Foundation for research grants.