By Dan Whiting|2021-08-10T10:46:48-04:00Aug 9, 2021|Blog|
A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).
By Dan Whiting|2018-04-09T15:30:50-04:00Apr 9, 2018|Advocacy, Research|
There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]
By Dan Whiting|2017-07-10T16:20:27-04:00Jul 10, 2017|Uncategorized|
The President's budget cuts CDC funding for Fragile X research and awareness. Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to [...]
By NFXF|2015-09-14T13:37:20-04:00Sep 14, 2015|Advocacy Day, FXCRC and Clinics, In the News, Keeping You Informed|
A $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause [...]
By NFXF|2013-08-30T13:20:29-04:00Aug 30, 2013|Keeping You Informed|
http://www.cdc.gov/ncbddd/spanish/fxs/index.html Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) ha traducido en español su página web sobre el Síndrome X Frágil. El sitio es igual [...]
By NFXF|2018-08-24T15:31:15-04:00Sep 30, 2011|Fragile Xtras, From the Executive Director|
Robert Miller, Executive Director of the NFXF I don't need to tell you that Fragile X syndrome can have a big impact on families! But exactly what is that impact and what can [...]
By Hilary Rosselot|2023-10-30T17:19:25-04:00Oct 26, 2023|Blog|
The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.
By Hilary Rosselot|2023-10-25T17:22:52-04:00Oct 3, 2023|Webinar|
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
By Kristin Bogart|2024-02-21T10:20:22-05:00Sep 25, 2023|Blog, FXCRC and Clinics|
Highlighting the Denver Fragile X Clinic at Children's Hospital Colorado, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
By Dany Petraska|2023-11-07T12:25:15-05:00Aug 27, 2023|
Reproductive Health and Your Options There is no one way to grow a family. Whether you know you carry a gene that can be passed on to your future children and want to explore [...]