Seven decades ago, Dr. Bernard Steinberger, a New York obstetrician and gynecology surgeon, married and fathered four sons. Tragically, each of his sons suffered from various symptoms of Fragile X syndrome, a family of genetic conditions resulting in mental impairment. He realized he had two choices … to wallow in self pity or to seek an answer to the causes and potential therapies for the disease. A man of intellect and fortitude, he chose the latter.
What this consisted of was first traveling to Europe and tracing his wifes family heritage, regularly collecting and sending blood samples back to Harvard and Yale to support researchers on the quest to detect the causes of Fragile X.
Named for the resemblance of a broken x-gene where FMR1 gene resides, Fragile X is a family of genetic conditions. These genetic conditions are all caused by changes in the FMR1 gene.
According to experts, Fragile X syndrome (FXS) is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or “autistic-like” behaviors. Symptoms also can include characteristic behavioral features, including hyperactivity, hypersensitivity, delays in speech and language development and severe mental disabilities. Physical attributes include elongated faces, prominent ears, nose and foreheads and loose joints.
Mrs. Sandy Steinberger, who is Dr. Steinbergers second wife, had been friends with the family and sadly watched the toll that the disease took on his entire family because it requires 24/7 devotion to caretaking and to education on possible therapeutic interventions. As a result she decided in 1994, on Dr. Steinbergers 70th birthday, to present him with the Foundation organization to insure his legacy. She is the Co-Founder and Chairman and said, “I felt it important to honor his efforts while he was alive rather than memorialize him after he is gone.” Dr. Steinberger passed away in 2005 and the Foundation, with its premiere reputation for supporting Fragile X children and their families, serves as his legacy. The Foundation is headquartered in Highland Beach, FL
The goal of the foundation is to support research, increase awareness among young couples of the syndrome, and promote early detection tests before and up to the 16th week of pregnancy. A simple blood test can identify whether one is a carrier.
In contrast to genes with a low rate of mutation, FMR1 has a high probability of mutating from one generation to the next, thus patterns for inheritance are complex. There can be a family with no known history of the syndrome until it appears in the children.
Investing in cutting edge medical technology and scientific research centers that are involved in bio-chemistry, genetics and clinical application, the foundation aims to find a cure in the near future while also heightening awareness of the disease among parents and potential donors.
This year, the foundation has reinvigorated its efforts, appointed a President, Anthony Bromley IV, who hails from the UK, an entrepreneur with international experience in marketing, real estate development, philanthropy and financial ventures. He is translating his business success to his passion… child-oriented causes, in this latest business enterprise.
Under his watch, the Foundation has recently established an exclusive partnership with leading genetic scientific researchers, studying the relationship of bone marrow to autism. A 44 year old father of two sons, Bromley is also targeting upcoming generations through techno/social marketing savvy. He aims to instill a spirit of philanthropy in the future by encouraging a $1 donation to a charitable cause out of every pocket of money they have now.
The Foundations first Annual Gala will be the signature event for Ft. Lauderdales Hotel W on September 12, 2009, complete with auctions and celebrities walking the red carpet. Willard Shepard WTVJ-NBC 6 Anchor will host . Watch for upcoming announcement on guests of honor.
Seven decades ago, Dr. Bernard Steinberger, a New York obstetrician and gynecology surgeon, married and fathered four sons. Tragically, each of his sons suffered from various symptoms of Fragile X syndrome, a family of genetic conditions resulting in mental impairment. He realized he had two choices … to wallow in self pity or to seek an answer to the causes and potential therapies for the disease. A man of intellect and fortitude, he chose the latter. 
