In 1997, Steve Hobelheinrich started a Listserv for people affected by Fibrous Dysplasia (FD) and McCune-Albright Syndrome (MAS) after his 13-year-old daughter was diagnosed with FD. The Listserv gathered resources for families, caretakers, and medical professionals and became known as the Fibrous Dysplasia Support On-Line (FDSOL).
In 1999, Charles Harles (Charlie) discovered FDSOL and immediately became an active participant. He partnered with Steve to improve the site and assumed responsibility when Steve’s daughter’s medical needs increased.
Charlie worked with Dr. Michael Collins at NIH, and a handful of other dedicated people with FD/MAS to connect people from the Listserv and those in the NIH study by holding informal gatherings. These gatherings soon developed into formal meetings that allowed everyone to learn more about FD/MAS and meet other individuals with this rare condition. For many of these individuals, this was the first time they met someone just like them.
During one of the early meetings, a small group gathered at the Harles’ house and determined that a formal organization would better serve individuals with FD/MAS. Charlie worked in partnership with Dr. Michael Collins, Bethesda, MD, to gather individuals with FD/MAS and medical professionals, and The Fibrous Dysplasia Foundation was born. This new organization would connect families and individuals with FD/MAS, promote accurate, up-to-date information on FD/MAS to medical professionals, and create research opportunities.
The Fibrous Dysplasia Foundation (FDF) was incorporated in Florida in June 2004, and in July, the 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. Charlie served as president of the FDF for the next 11 years.
In 2019, the FD/MAS community lost a beloved leader and founder of the FDF, Charles William Harles.
In 2020, the Board of Directors and other stakeholders found the organization at a critical inflection point. With new leadership in place, the Board voted to keep the Fibrous Dysplasia Foundation, Inc. as the legal name and use FD/MAS Alliance as the trade name. This new name reflects a renewed commitment to focus our fight to improve patients’ and caregivers’ lives. And while the world has changed in unprecedented ways, the FD/MAS Alliance is determined to work harder and smarter to advance Charlie’s vision and legacy.
