The National Fragile X Foundation

10/09/2026

What does it mean to have the Fragile X premutation, and what health conditions should you be aware of?

Having the FMR1 premutation doesn't necessarily mean someone will develop an associated condition. Many individuals live healthy lives without symptoms. However, understanding the potential risks and knowing when to seek care is important.

In our latest blog, we explore the range of symptoms and conditions associated with the Fragile X premutation, including FXTAS, FXPOI, and FXAND, and share guidance on navigating healthcare and finding the right specialists.

💚 We’re also sharing healthcare visit checklists and worksheets designed to help individuals organize their symptoms, prepare for appointments, and advocate for the care they need.

🔗 Read the full blog, explore the resources, and download the free healthcare checklists!

https://hubs.ly/Q04zPl-v0

10/08/2026

October is National Disability Employment Awareness Month!

Many individuals living with Fragile X want to work and have the opportunity to share their strengths, build new skills, and thrive alongside their peers. But finding the right job - and understanding the supports and accommodations available - can be challenging.

In our latest blog, NFXF Executive Director Hilary Rosselot shares resources to help individuals with Fragile X and their families explore employment opportunities, navigate workplace accommodations, and advocate for the support they need.

Because creating inclusive workplaces isn’t just important during National Disability Employment Awareness Month - it’s important all year long. 💚

Read the full blog and explore employment resources available to the Fragile X community.

https://hubs.ly/Q04zybyC0

10/07/2026

🎓 Meet 2026 NFXF Summer Scholar Tim Smith!

Tim is an undergraduate freshman at Brown University, studying Neuroscience. This summer, under the mentorship of Aditi Singh, PhD, and Emily Osterweil, PhD, he conducted research at Boston Children’s Hospital exploring the molecular changes associated with Fragile X syndrome.
Using a human brain tissue model, Tim’s project examines how genes change when FMR1 is reduced and compares those changes with other neurodevelopmental disorders. His work aims to better understand what may be specific to Fragile X syndrome and what may be shared across conditions - ultimately helping inform better disease models and future research.

Along the way, Tim gained experience combining computational analysis with hands-on laboratory techniques and strengthened his goal of pursuing a career as a physician-scientist in neurology.

🔬 Hear more directly from Tim and watch his 2026 Randi J. Hagerman Summer Scholar presentation at the link!

https://hubs.ly/Q04ywwFv0

10/06/2026

We’re thrilled to share our latest project to raise awareness of Fragile X - a video that will air nationwide on PBS, reaching 3 million viewers over the next three months! As we know, getting a Fragile X diagnosis can be complicated, and early intervention, therapies, and community support can help individuals with Fragile X syndrome reach their full potential.

Thank you to Sydney Rainin-Smith for lending your voice to this project!

🎥 https://youtu.be/OWkz0cHCljY?is=WJgsvtnp_PRsxg7p

The NFXF serves all those living with Fragile X, focusing on Advocacy, Education, Research, and Treatment with Community at the heart of everything we do.

10/05/2026

🧬 What can RNA and proteins reveal about what’s happening in the Fragile X brain?

Research from Dr. Nisha Raj’s lab at Emory University is taking a closer look at the molecular changes associated with FXS and FXTAS by studying both RNA and protein levels in the brain.

The findings suggest a complex picture: changes in RNA levels don’t always match changes in proteins, and researchers also identified differences in how proteins are regulated - particularly in pathways important for synaptic function, brain cell structure, and communication.

In our latest research summary, Hungoo Lee, PhD, Assistant Professor at Johns Hopkins School of Medicine, breaks down Dr. Raj’s findings and what they could mean for our understanding of FXS and FXTAS.

🔬 Read the full summary to learn more about this research. 💚

https://hubs.ly/Q04yQy-Z0

10/02/2026

We are proud to announce that the NFXF has been awarded a $1 million grant from the Centers for Disease Control and Prevention for a new FORWARD initiative titled, “Component C: Creating Resources, Support, and Strengthening Capacity for People with FXS.”

This significant investment represents an exciting step forward for the Fragile X community and reinforces the importance of ensuring that individuals with Fragile X syndrome (FXS), their families, and the professionals who support them have access to high-quality, evidence-based information and resources.

Most importantly, this project is about listening, learning, and responding to the needs of the people at the heart of the Fragile X community. As this exciting work begins, watch for upcoming opportunities to provide feedback, participate in assessments, and contribute to the project!

Read more: https://hubs.ly/Q04z332N0

10/01/2026

Shionogi would like to share an important update about the adolescent open-label extension portion of the zatolmilast trial. Following a comprehensive review and analysis of the data, it was determined that the efficacy measures utilized did not detect a positive treatment signal in the adolescent trial, therefore they are closing the open-label extension of the adolescent trial (17 and under) only. Read the letter from Chief Medical Office, Juan Carlos Gomez, who explains the details: https://hubs.ly/Q04yQCP50

We know this is hard news. Please reach out to us; we're here to listen and to help. Our deepest thanks to all the families who participated in this trial and continue to participate in trials.

09/30/2026

💚 If you’ve ever searched for Fragile X syndrome treatment information and walked away feeling more confused than when you started, you’re not alone.

FXS can affect learning, behavior, speech, sensory processing, anxiety, and physical health - which means treatment information often comes from many different specialists and sources. And because every person with FXS has different needs, there’s no single treatment plan that works for everyone.

Our latest blog breaks down why Fragile X treatment information can feel so overwhelming - and, more importantly, how to make it easier to navigate. From identifying your family’s most pressing needs to finding trusted resources, specialized clinics, and community support, we’re here to help you connect the pieces.

📖 Read the full blog: “Why Fragile X Syndrome Treatment Information Feels So Confusing.”
https://hubs.ly/Q04yFyL70

09/29/2026

🎓 Meet 2026 NFXF Summer Scholar Iris Chen!

Iris is an undergraduate junior at Emory University, studying Biology. This summer, under the mentorship of Peng Jin, PhD, she continued investigating semaglutide as a potential therapeutic for Fragile X-associated tremor/ataxia syndrome (FXTAS).

Her research uses an FXTAS mouse model to explore whether semaglutide may help reduce neurodegeneration and improve symptoms associated with FXTAS. Along the way, Iris gained new experience in RNA sequencing, deepened her understanding of disease mechanisms, and strengthened her connection to the Fragile X community.

🔬 Want to hear more directly from Iris? Watch her 2026 Randi J. Hagerman Summer Scholar presentation at the link!

https://hubs.ly/Q04ywwbV0

09/28/2026

What does the Texas v. Kennedy ruling mean for community living and Medicaid HCBS?

Our latest advocacy update breaks down what has changed, what has not changed, and why both federal and state advocacy matter.

Have questions about the NFXF’s advocacy work? Reach out to us directly at [email protected].

https://hubs.ly/Q04ywTD60