GivingTuesday Matching Challenge

Thank you for helping us turn 25,000 into 50,000!

To the hundreds of families and individuals who donated on GivingTuesday (Nov. 29) to help us meet (and exceed) our #GivingTuesday matching challenge, THANK YOU!!! Your support makes a world of difference to the entire Fragile X community. In just five days, we raised over $55,000 to promote advocacy, provide education, advance research, and improve treatments for Fragile X syndrome, and the premutation conditions and disorders like FXTAS and FXPOI.

It is only when we work together that we can achieve the brightest future for everyone impacted by Fragile X. Thank you for all that you do.

Let’s Keep It Going

Fragile X syndrome is the most common inherited intellectual and developmental disability. Up to 1.5 million Americans have the gene premutation, and up to 100,000 Americans have the full mutation — Fragile X syndrome.​ The landscape of managing life with Fragile X is constantly changing and presents a unique set of challenges for parents and caregivers. Your support helps at every step.

Only when we work together can we achieve the brightest future for everyone impacted by Fragile X. 

You are helping us form strategic partnerships with organizations in our space, maximizing our reach on behalf of individuals living with Fragile X and their families. Our rich partnerships with the EveryLife Foundation, the CEO Commission, and the National Ataxia Foundation leverage our shared interests for a larger impact. Your generosity supports our annual Advocacy Day and effective strategic partnerships like these, as well as personalized support services for families — from newly diagnosed, to those struggling with ongoing issues or facing a crisis.

You are enabling us to provide the highest quality educational content at the NFXF’s International Fragile X Conferences as well as all year round through our webinars, e-books, Info Series, Knowledge Center, and the Fragile X MasterClass. These are imperative to our mission and would be impossible to do without your support. We are proud of the extensive library of content and resources you have helped us build over the years and are excited to share our new Resources for Families webpage, which intuitively organizes all the top resources, so they are at your fingertips (coming soon!).

You are growing our investment in the next generation of Fragile X professionals. The NFXF is committed to promoting scientific and research advancements, and one of the ways we’re doing this is through our Jr. Investigators and Randi J. Hagerman Summer Scholars programs. Both the Jr. Investigators and the Summer Scholars spent time with the NFXF Team and Fragile X community, furthering their understanding of the invaluable collaboration that moves Fragile X research forward.

Alongside professionals, the NFXF authored a publication on observable symptoms of anxiety in Fragile X syndrome, which furthers our collective voice to educate the scientific community as well as agencies like the FDA about anxiety as a pervasive challenge in Fragile X. Fragile X research is closer to better medical and non-medical treatments because of donors like you making an investment in the future.

You are increasing the access and availability of current, informed treatment options for all individuals with Fragile X. Your support allows us to coordinate the Fragile X Clinical and Research Consortium to bring together diverse professionals to improve care, inform best practices, and develop a set of collaborative treatment recommendations. We worked with FXCRC professionals to publish four Treatment Recommendation documents this year, covering medications, seizures, assessment, and mosaicism. These comprehensive publications are invaluable resources to both professionals and caregivers. The strength of the FXCRC has also helped support FORWARD, the CDC-funded natural history study of Fragile X. Numerous publications continue to be produced using this data to further inform treatment recommendations and further research.

Ways to Give

Contact

Don’t hesitate to email Kristin Bogart if you have any questions or concerns!

author
Kristin Bogart, Senior Director, Development and Communications

Kristin Bogart
Kristin joined the NFXF team in 2019. She has over 20 years of experience in fundraising and non-profit management, event planning, and board and volunteer development. She earned a bachelor’s degree in economics and a master’s in public administration. Kristin loves spending time with her two teenage sons and in the company of friends, and enjoys gardening, running, and hiking in the Santa Cruz mountains.

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