In 1997, Steve Hobelheinrich founded a web site 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 the 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). In 2004, membership on FDSOL topped 1500, with more than 750 registrants from the USA and other countries actively participating in a regular exchange of e-mail.
In 2003, a conversation developed on FDSOL about the need to formalize an organization to advocate for the development of research and treatment options for FD patients. Five members formed an action group to pursue the matter. The Fibrous Dysplasia Foundation incorporated in Florida in June 2004, and in July expanded the volunteer Board of Directors to 8. 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 the 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 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.