$2.2 Million Grant To Enhance Public Health Knowledge About Fragile X Syndrome
From the New York State OPWDD press release
(STATEN ISLAND) The New York State Office for People With Developmental Disabilities’ (OPWDD) Institute for Basic Research in Developmental Disabilities (IBR) has been selected to receive a $2.2 million, four-year cooperative agreement grant from the National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Centers for Disease Control and Prevention (CDC) for research on fragile X syndrome, Commissioner Courtney Burke announced today.
… and a few quotes from the press release
Commissioner Burke said, “This collaborative grant will provide the resources necessary to improve the care, health, and lives of individuals with fragile X syndrome, with potential benefits to other groups affected by intellectual disabilities.”
NFXF Executive Director Robby Miller said, “The NFXF is committed to seeing that all individuals in the US who are diagnosed with fragile X syndrome receive care that is based on the best available data. This grant will ensure that is the case, and we are honored to work with IBR, the CDC, and the Data Coordinating Center.”
Dr. [W. Ted] Brown said, “I am very pleased to receive this grant on behalf of the FXCRC and in support of the many families affected by fragile X syndrome. In collaboration with the NFXF and the CDC, we will now be able to develop a data collection and analysis approach that will lead to a greater understanding of this syndrome, co-occurring conditions and associated risk factors, and conventional treatments. This approach could provide valuable information for targeted interventions.”
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[...] The Fragile X Clinical Research Consortium (FXCRC) has been funded by CDC for another 4 years. [...]
[...] example by funding the work of the Fragile X Clinical & Research Consortium (FXCRC) with a new, 2.2 million, four-year grant following a just-completed three-year [...]
What is this $2.2 million dollars being spent on? Salaries? Research? Aid directly to individuals? What?!
Greetings Charles,
Our Executive Director, Robby Miller provided the following as an answer to your questions:
The first thing to remember is that the 2.2 million is spread out over four years. i.e. $550,000 per year. These funds come from the Fragile X program budget at the CDC.
This is primarily a research grant designed to collect more data and better data from families and to analyze how fragile X syndrome impacts them so that interventions, including medication interventions, can be based on scientific, not anecdotal, information. Much of the funding is for reimbursement to clinics for the time and effort required to collect information from families and to transmit that information to a secure and centralized database. Part of the funding is for a full-time national coordinator who will be a scientist. It also supports very small parts of the salaries of the other scientists who are involved with the data collection and analysis and the administrative staff of the consortium who work on and manage this grant. And lastly, it allows for one annual meeting of the consortium. Since the consortium involves 25 U.S. clinics, the Institute for Basic Research in Developmental Disabilities on Staten Island, the Data Coordinating Center at Columbia University and the National Fragile X Foundation, this funding gets stretched pretty thin. The good news is that more than 250 families have already agreed to be part of the database and over 1100 have joined the consortium’s registry indicating their interest in being part of research projects.
This grant does not provide direct funding to families however the National Fragile X Foundation does have a charitable fund to assist families with visits to clinics for evaluation and treatment. Clinic Coordinators request this assistance on an as-needed basis. (Families should contact their closest clinic coordinator to learn more.)
[...] The Fragile X Clinical Research Consortium (FXCRC) has been funded by CDC for another 4 years. [...]