The National Fragile X Foundation

05/13/2026

Shionogi, Inc. is releasing updates from EXPERIENCE-301, the adult study in ages 18–45, and EXPERIENCE-204, the adolescent study in ages 9–17.

Please read their full letter here 👉 https://fragilex.org/research-fx/update-on-experience-fragile-x-clinial-trial/

Join us for a community Q&A session, hosted by the NFXF, FRAXA, and Shionogi
🗓️ Tuesday, May 19, 2026 @ 12PM ET

Register now & submit your questions early 👇https://hubs.ly/Q04gr2N40

05/07/2026

There’s nothing quite like being surrounded by people who truly get it 💚

The NFXF International Fragile X Conference brings together families, self-advocates, researchers, clinicians, and caregivers from around the world for connection, learning, and community.

✨ Registration is open now
📍 Louisville, KY | July 16–19

We’d love to see you there.

05/05/2026

Looking for a meaningful way to support the Fragile X community? 💚

The MyFXResearch Portal connects individuals and families with expert-reviewed research opportunities. Every study is carefully evaluated through our Research Readiness Program to ensure it’s both high-quality and considerate of families’ needs.

Research is essential to developing new treatments, but many studies can’t move forward without volunteers.

If you’ve ever thought about participating, this is a great place to start.

🔗 Explore opportunities and learn more: https://hubs.ly/Q04fxRRM0

05/01/2026

We’re proud to share our updated FXTAS Treatment Recommendations 💚

Fragile X-associated tremor/ataxia syndrome (FXTAS) is a complex condition that requires individualized care. These recommendations provide guidance on recognizing symptoms, building the right care team, and exploring treatment options to better support individuals and families.

From medications and therapy to mental health support and lifestyle considerations, this update emphasizes a multidisciplinary, personalized approach to care.

🔗 Read the full recommendations here https://hubs.ly/Q04f83KB0

04/30/2026

Did you know 82% of children with Fragile X participate in at least one social activity? 💚
New research using FORWARD data looked at what helps children with Fragile X engage in sports, clubs, friendships, and community activities - and what barriers families face.
The biggest barriers? Behavioral challenges, time constraints, and lack of community resources.
This research helps us better understand how to create more inclusive opportunities for children with Fragile X to thrive.
✨ And this is exactly why FORWARD-MARCH matters - more participation means more research that improves lives.
Learn more at forwardfx.org

04/29/2026

Girls and women with Fragile X deserve resources that reflect their unique experiences 💚

Join us for the next webinar in our Females with FXS series, presented in partnership with the LivJoy Foundation: Health, Wellness & Fertility.

Our expert panel will discuss important topics like physical and mental health, puberty, menstruation, sexuality, fertility, and future family planning, all through the lens of supporting females with Fragile X syndrome.

✨ Honest conversations
✨ Expert guidance
✨ A space built with females with FXS in mind

🗓 May 12
⏰ 7 PM ET
🔗 Register now https://hubs.ly/Q04dPqJs0

04/28/2026

Still thinking about joining us in Louisville? 💭

Hear it from a parent who’s been there: the NFXF International Fragile X Conference is where families come to make informed decisions, learn directly from leading experts, and connect with others who truly understand the journey.

From expert-led sessions to meaningful family connections, there’s something powerful about being in a space where everyone gets it. 💚

⏰ Early bird registration closes on Thursday - don’t miss your chance to save your spot (and your savings) for the 20th NFXF International Fragile X Conference.

📍 Louisville, KY
📅 July 16–19

04/27/2026

Research Opportunity for Girls Living with Fragile X Syndrome!

Girls ages 8–12 who are living with Fragile X syndrome (FXS) or autism spectrum disorder (ASD) are invited to join a study being done by researchers at the University of Wisconsin–Madison Waisman Center & the University of California Davis MIND Institute.

📚 Help these researchers learn how language & executive function impact academic + social skills in girls — a major gap in current research.

The study includes:
🧠 2 in-person visits (2 years apart)
🖱️ 1 at-home survey visit
📝 Language & behavioral testing + parent questionnaires
📱 Assessment report

Learn more about the study here: https://hubs.ly/Q04dynRx0

Interested in joining? Complete the study interest form here 👉https://hubs.ly/Q04dyb8p0

A new study looks at how language and executive function affect academic skills like literacy and social skills in girls with Fragile X syndrome.

04/23/2026

Exploring complementary or alternative therapies for Fragile X? You’re not alone 💚

From yoga and meditation to supplements and sensory-based therapies, many families explore additional tools to support their loved ones. Our updated treatment recommendations break down what’s currently known, what may help, what lacks evidence, and what families should discuss with their care team before trying.

The biggest takeaway: every individual with Fragile X is different - and informed decisions matter.

✨ Swipe through for a little movement inspiration from our incredible self-advocates at conference
🔗 https://hubs.ly/Q04dgjCd0

04/22/2026

Missed our latest Females with FXS webinar? We’ve got you covered 💚

The recording for Tools & Tactics for Anxiety - part of our webinar series in partnership with the LivJoy Foundation - is now live.

Our expert panel shared practical strategies for managing anxiety across school, work, relationships, and daily life, while highlighting the unique experiences of girls and women with Fragile X syndrome. Topics included anxiety symptoms, treatment options, sensory supports, social strategies, and more.

Thank you to our incredible panelists and to the LivJoy Foundation for helping ensure females with Fragile X feel seen, supported, and understood.

🎥 Watch the recording now: https://hubs.ly/Q04d2ZTR0
✨ And stay tuned for the next webinar in the series: Health, Wellness & Fertility on May 12

04/16/2026

“It’s a big family.” 💚

That’s the conference.

Connection. Community. Conversations that matter.

✨ Join us in Louisville�Registration is now open!