The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.
The National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
The NFXF has worked hard over the past 40 years to increase our understanding of Fragile X-associated conditions and we will continue to do so in the years to come!
New family-friendly content is available that will provide families and other caregivers with a better understanding of the possible causes of aggressive behavior along with recommendations for how to respond during and following an aggressive incident.
Established in 2006, the NFXF Fragile X Clinical and Research Consortium is a network of over 30 clinics that specialize in Fragile X care.
The NFXF International Fragile X Conference has grown significantly over the past 40 years, and remains profoundly impactful.
The NFXF has continually adapted to the times when it comes to the best ways to communicate with the Fragile X community.
Thankfully, we’ve come a long way since the day when FXS was jokingly referred to as “Fragile WHAT Syndrome?!” In the 1990s, many changes were taking place as a result of the increased scientific study of Fragile X and how the growing body of knowledge was impacting the work of the Foundation.
The focus in the early years of the NFXF was to “get the word out!” During that time period, the inherited nature of Fragile X was not fully understood. However, early pioneers in the Fragile X world, such as Dr. Stephanie Sherman and Dr. Ted Brown, were steadily making progress in sorting out the genetics.
At the beginning of the 1980s, a young developmental pediatrician, Dr. Randi Hagerman, was building a career at Children’s Hospital Colorado. Her curiosity led her to some of the early papers on X-linked intellectual disabilities (in particular, those of Dr. Gillian Turner from Australia) and descriptions of what was still often referred to as Martin-Bell Syndrome.
Hear an overview of how the Early Check team integrates telehealth models to provide families with the necessary information, support, surveillance, and intervention.
Experts Deborah Hall, Maureen Leehey, Peter Todd, and Nancy Hertzig discuss the latest in FXTAS research and treatment.
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
Robby Miller's story of his trip to the Philippines to establish a Fragile X clinic at the already existing MedMom Clinic in Manila.
A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions.
