The National Fragile X Foundation

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The National Fragile X Foundation

We focus on Advocacy, Education, Research, and Treatment.
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Since 1984, the National Fragile X Foundation has been providing knowledge, resources and tools to families living with Fragile X and the professionals support them throughout their lifespan. Since 1984, the National Fragile X Foundation has been committed to supporting the entire Fragile X community - families living with Fragile X and the professionals who strive to serve them throughout their l

ifespan - by providing the knowledge, resources and tools they need, until and even after more effective treatments and a cure are achieved.

08/19/2026

🏆 2026 Hagerman Award

Congratulations to Dr. Flora Tassone, recipient of the 2026 Hagerman Award!

Dr. Tassone's groundbreaking work in molecular research and biomarkers has significantly advanced our understanding of the Fragile X premutation and FXTAS. Her leadership in biobanking and dedication to fostering global collaboration continue to accelerate research and bring hope to families around the world.

Thank you, Dr. Tassone, for your remarkable contributions to the Fragile X field and for inspiring collaboration across the research community. Congratulations on this well-deserved recognition!
https://hubs.ly/Q04sGzwl0

08/18/2026

Meet Zac - One of Our Xtraordinary People! ⭐

Zac is an Xtraordinary person with a contagious laugh and a smile that can brighten any room. His mom, Sheri, says, "He loves everyone especially Jesus! Even when things are hard he keeps trying until he accomplishes it. He is the most loyal, loving, and kind person. He remembers and hears everything. He reminds me of things like stopping by pharmacy, what I need at the store, and when I miss my turn. lol! I am so blessed God chose me to be his mom!”

Special Facts About Zac
😂 Has great imitative skills and loves to make people laugh
🐴 Loves to ride horses
✈️ Loves to travel
🎶 Loves to sing gospel music

Help us celebrate Zac!

08/17/2026

The BLOOM clinical study is researching to see if an investigational medicine, MRM-3379, can safely and effectively help improve certain symptoms of Fragile X syndrome. Talk to your healthcare provider about participating.

https://hubs.ly/Q04mw77l0

08/15/2026

🚨 NFXF MERCH FLASH SALE! 🚨

We have a few goodies left over from the 20th NFXF International Fragile X Conference, and they’re officially on sale!

👕 2026 X Strides T-shirts
🛍️ Conference merch + more
✨ Special sale prices while supplies last

Sizes and quantities are limited, so once they’re gone, they’re gone!
Shop the flash sale now: https://hubs.ly/Q04sWdSk0

08/14/2026

🏆 Congratulations to our 2026 X Strides fundraising winners! 👟

Throughout Fragile X Awareness Month, our community stepped up to raise funds, spread awareness, and show their support for individuals and families impacted by Fragile X. We are so grateful to everyone who participated, donated, shared, walked, and cheered each other on!
A huge congratulations to our Top 5 Individual Fundraisers:

💙 Carly Dolan
💙 Marcella Almeida
💙 Peggy Flanigan
💙 Ross Cameratta
💙 Carley Rothstein

And congratulations to our Top Fundraising Team: Miles for Milo! 🎉

Our top individual fundraisers will receive custom X sneakers, and Miles for Milo will receive a $500 gift card to celebrate together as a team!

Thank you to our entire X Strides community for making this year's campaign so Xtraordinary. Every step, donation, and conversation helps raise awareness and support the work of the NFXF.
https://hubs.ly/Q04sX8870

08/13/2026

Aaron Haugen took X Strides to a new level this year. 🎉

He walked 100 miles (2 miles per day during the months of May, June and July, carefully marking off his accomplishments each day) and raised over $8,000 from his family, friends and supporters.

We are so proud of you, Aaron - way to go! Thank you to all who supported Aaron and the NFXF to help raise awareness of Fragile X this summer!

https://hubs.ly/Q04sRmMv0

08/12/2026

🏆 2026 Al & Melissa Blount Lifetime Achievement Award

Congratulations to Joey Christoff, recipient of the 2026 Al & Melissa Blount Lifetime Achievement Award!

Joey has been a tireless champion for the Fragile X community for many years. From serving as NFXF Board President to hosting the annual Fishing for a Cure fundraiser and raising awareness in countless creative ways, his impact has been extraordinary.

Thank you, Joey, for your years of leadership, generosity, and unwavering commitment to improving the lives of families affected by Fragile X. Congratulations on this incredible honor!

08/11/2026

Meet Erik - One of Our Xtraordinary People! ⭐

Erik is an Xtraordinary 14-year-old who is a ray of sunshine and brings joy to everyone he meets! His mom, Christin, says, “One thing that is unique about Erik is that he was not diagnosed with Fragile X until he was almost 12 years old. We don't put limitations on him and he continues to defy any obstacles in his way. Our superstar Erik is Xtraordinary!”

Special Facts About Erik
🏈 Loves the Buffalo Bills, especially Josh Allen
🎶 Favorite song: “Three Little Birds” by Bob Marley
🍕 Favorite food: Pizza — and he knows all of the local delivery drivers by name!
🛶 Loves kayaking
🏖️ Loves playing at his neighborhood beach

Help us celebrate Erik!

08/06/2026

🏆 2026 NFXF Clinical Award

Congratulations to Dr. Deborah Sara Barbouth, recipient of the 2026 NFXF Clinical Award!

As Director of the South Florida Fragile X Clinic, Dr. Barbouth has dedicated her career to providing compassionate, family-centered care to individuals living with Fragile X-associated conditions.
Her holistic approach to care and her commitment to expanding services - including the development of a women's clinic - continue to make a meaningful difference for families across the Fragile X community.

Thank you, Dr. Barbouth, for your outstanding clinical leadership and unwavering dedication. Congratulations! 💙 https://hubs.ly/Q04rSGRl0

08/04/2026

🏆 2026 NFXF Community Impact Award

Congratulations to Marcella Almeida, recipient of the 2026 NFXF Community Impact Award!

After three of her four children were diagnosed with Fragile X syndrome in 2022, Marcella and her family turned their journey into action. From raising awareness in their local community to participating in X Strides and the NFXF International Fragile X Conference, the "Little Rhody Warriors" have become incredible advocates for the Fragile X community.

Thank you, Marcella, for your passion, dedication, and unwavering commitment to helping others. Congratulations on this well-deserved recognition! 💙
https://hubs.ly/Q04rQWhj0

Address

Washington D.C., DC

Telephone

+18006888765

Website

https://fragilex.org/

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