We are immensely grateful to all our corporate and non-profit partners for their support at this year's Fragile X Conference. Your contributions and dedication to the Fragile X community have been pivotal in facilitating a successful and enriching event. Thank you for standing with us and helping advance our mission. We look forward to continuing our partnerships and making even greater strides together. #FragileXConference #CorporateSupport #NonProfitPartners #CommunityImpact
National Fragile X Foundation
Non-profit Organization Management
Washington, District of Columbia 1,182 followers
Our mission is to provide unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure.
About us
The National Fragile X Foundation has been committed since the organization was formed in 1984 to help families, spread awareness, find improved treatments, and support research leading to better treatments and an eventual cure for all Fragile X-associated disorders. Mission The National Fragile X Foundation unites the Fragile X community to: - Enrich lives through educational and emotional support - Promote public and professional awareness - Advance research toward improved treatments and a cure for Fragile X.
- Website
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https://fragilex.org
External link for National Fragile X Foundation
- Industry
- Non-profit Organization Management
- Company size
- 2-10 employees
- Headquarters
- Washington, District of Columbia
- Type
- Nonprofit
- Founded
- 1984
- Specialties
- Advocacy, Support, Awareness, and Research
Locations
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Primary
1210 14th St NW
Suite 500
Washington, District of Columbia 20005, US
Employees at National Fragile X Foundation
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Kristin Bogart
Senior Director, Development and Communications
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Steve Strom
Director, Money Follows the Person, NC Department of Health and Human Services
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Patricia Kelly-Kisamore
Community Based/Autism Teacher at East Baton Rouge Parish School System
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Molly Jenkins
Teacher and Fragile X Advocate
Updates
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Join us via webinar tomorrow, August 14th, at 1PM ET for our 🍽️ Lunch & Learn 🍽️ Series where Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann will discuss two top-cited articles in the American Journal of Medical Genetics Part A: 'Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS' and 'Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort'. Registration is required! Be sure to register for the webinar here: https://hubs.ly/Q02L9V5g0 #fragilex #research #topcitedarticle #journalofmedicalgeneticsparta
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🤩 The American Journal of Medical Genetics Part A recently congratulated Fragile X researchers for authoring – not one but – TWO of their top 10 most-cited scientific papers. These papers were the result of FORWARD data from our FORWARD study, which has created the largest database of information on Fragile X syndrome (FXS) in the United States. This recognition of having two #TopCitedArticles is a major achievement and highlights the impact of Fragile X research within the community! Join us via webinar next Wednesday, August 14th, at 1PM ET for our Lunch & Learn Series where Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann will discuss these top cited publications: 'Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS' and 'Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort'. Registration is required! Be sure to register for the webinar here: https://hubs.ly/Q02KtWF90 #fragilex #research #topcitedarticle #journalofmedicalgeneticsparta
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As we close the chapter on this year's Fragile X Conference, our hearts are full of gratitude and nostalgia. It's truly remarkable how time flies when you're surrounded by such passionate and inspiring individuals. Each session, story, and shared laugh has reminded us of the immense strength and dedication within our community. We are deeply thankful to everyone who joined, contributed, and shared in this incredible gathering. Your involvement has made this event unforgettable, enriching our collective journey towards understanding and supporting Fragile X. As we look to the future, we are excited to announce that the next conference will be held in Louisville, Kentucky, in 2026. We can't wait to reunite with our community and build even more memories together. #FragileXConference #FragileXAwareness #FragileX
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Congratulations to our 2024 Junior Investigators! These bright professionals will attend the NFXF 19th International Fragile X Conference and present a poster of their work. When you see them at the conference, be sure to say hi! Join us in celebrating our 8 awardees! 🔬Lisa DeStefano, PhD, Cincinnati Children’s Hospital 🔬Brett Dufour, PhD, UC Davis 🔬Nell Maltman, PhD, University of Arizona 🔬Caroline Dias, MD, PhD, Children’s Colorado 🔬Andrew Dakopolos, PhD, UC Davis 🔬Sarah Nelson Potter, PhD, CCC-SLP, RTI International 🔬Walker McKinney, PhD, Cincinnati Children’s Hospital 🔬Kimaya Sarmukadam, PhD, University of South Carolina We are SO excited to have such brilliant minds in the Fragile X field. The NFXF is proud to support these Junior Investigators and build the next generation of Fragile X experts. Learn more about the NFXF Junior Investigator Awards program here: https://hubs.ly/Q02Ht9fn0 🖱️ #FragileX #FragileXResearch
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We are grateful to have Dr. Craig Erickson and Spinogenix, Inc. as a sponsor for this year's National Fragile X Foundation International Conference! With a shared commitment to the Fragile X community, Spinogenix is dedicated to bringing new hope through innovative treatments aimed at addressing core symptoms of Fragile X Syndrome. Join us as we continue to foster connections, share knowledge, and drive progress in the field. We can't wait to see you there! #FragileXConference
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Exciting news from Dr. Jeffrey Dayno, CEO of Harmony Biosciences! Join us as he shares Harmony’s dedication to advancing treatments for rare neurological diseases and their commitment to the Fragile X community through the RECONNECT study. We’re thrilled to have Harmony sponsor and attend the upcoming International Fragile X Conference this July in Orlando, FL. See you there! #FragileXConference
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A big thank you to Tetra Therapeutics and Shionogi Inc. (U.S.) for sponsoring this year's NFXF International Fragile X Conference! Stop by their tables to learn about their clinical trials and their dedication to advancing research and support for the Fragile X community. 🙌 See you soon in Orlando! #FragileXConference
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National Fragile X Foundation reposted this
Fragile X syndrome (#FXS) is a rare genetic condition that impacts an estimated 80,000 people in the U.S. Fragile X Awareness Month (#FXSMonth), led by the National Fragile X Foundation, is an important effort to support people with Fragile X syndrome and their families/caregivers by raising much needed awareness, education, and research. This month, and always, our commitment to patients is unwavering as we work to advance our #science into therapeutic possibilities. Learn more about our FXS research: https://lnkd.in/e5zurz86 #FragileX #Innovation #RareDiseases
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National Fragile X Foundation reposted this
Fragile X syndrome is a rare disease that significantly affects the lives of individuals and families. As with many rare diseases, there are limited treatment options for people with Fragile X. This #FragileXMonth, we’re showing our support for the Fragile X community at the National Fragile X Foundation conference, an event which brings people with Fragile X, their families and the medical community together for an educational and empowering experience: https://lnkd.in/gP_52KgD