Dan Whiting
Dan served as the NFXF Director of Community Impact from 2017 to 2022. He has over 23 years of experience in public policy and communications, including 11 years as a staff member for a U.S. Senator, in the Bush Administration as Chief of Staff at an agency, and as a senior strategist for communication initiatives across the DOD. During his time at the NFXF, he was passionate about helping individuals with intellectual and developmental disabilities live better lives.
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The cooperative agreement was awarded to Dr Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention.
American Idol featured Sophia’s relationship with her brother James, who has Fragile X syndrome. The show reached 8.05 million viewers.
The NIH is the biggest funder of Fragile X research — around $40M per year. That is why their strategic plan to guide Fragile X research is so important.
Early Check screening for Fragile X will give researchers important information about how Fragile X affects infants and toddlers before any signs or symptoms are noticed by parents or doctors. It provides very early developmental assessments and intervention. It will also help prove whether early diagnosis and intervention have long-term benefits for children with Fragile X syndrome.
If you’re looking for fundraising ideas, consider these suggestions from Joey Christoff, who recently hosted his fourth “Fishing for a Cure” fundraiser.
Dillon worked on Capitol Hill as an intern for the Committee on House Administration, chaired by Rep. Gregg Harper, whose son also has Fragile X syndrome.
Early Check, a new research study, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening.
Nine friends chipped in to enjoy six days of fishing, golf, tennis, swimming, zip-lining, biking, the beach, and anything else on the island. Everyone was able to enjoy time away and donate to support community, awareness, and research for Fragile X families.