We explain where the challenges come from, what makes FXS treatment different from other conditions, and how to start building a clearer picture of your options.

Moms gathered last week to provide support for one another and share about their family members living with Fragile X.

A Message from Harmony Biosciences about the RECONNECT Trial and the conclusion of its Open Label Extension (OLE) program

Mirum Pharmaceuticals has officially enrolled the first participant in its BLOOM Phase 2 clinical study evaluating MRM-3379, a potential new treatment for Fragile X syndrome (FXS).

The holiday season can feel more like survival mode. Changes in routine, packed social calendars, and lack of sleep create unique challenges for individuals with Fragile X syndrome.

Bowen’s FX Therapeutics, a company with roots in the Fragile X community, is advancing efforts toward a future protein replacement therapy.

FXTAS was first described in five grandfathers of children with Fragile X syndrome in 2001 by Dr. Randi Hagerman and her colleagues.

Yet again, this year’s fundraiser was the most successful yet, with a record 35 teams — making it the first time they filled all available holes with teams!

Congratulations to our 2024 Junior Investigators! 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.

The Fragile X Program provides services and referrals for children and young adults with FXS and FXD, including FXTAS and FXPOI.

The most effective way to support someone living with FXS in any setting is to maximize their focus, cooperation, and enjoyment.

At Harmony, we believe that where empathy and innovation meet, a better life can begin for patients living with rare neurological diseases and their families.

The neurodegenerative symptoms investigated in this study are due to FXTAS.

Allos Pharma, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights to arbaclofen in Fragile X syndrome.

Our partners at the CDC released a new paper intending to help clinicians identify preventive care services that their patients with FXS may need.

Because there are genes known to be associated with autism — Fragile X being the most common — it is important to test for the presence of an underlying genetic disorder.

A Q&A with David L. Nelson, a professor at Baylor College of Medicine, on the newly released study, Common-Variant Associations with Fragile X Syndrome.

We take a look at behavioral issues in individuals with FXS plus ASD and compare them to those with FXS alone.

This list is by no means exhaustive, but is based on important information the Morgridge College students discovered when researching adult services for those with Fragile X syndrome.

A wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels.

Behavioral outbursts and aggression are critical incidents in the home or the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns, which can amplify their response to these critical incidents.

We use a variety of visually-based supports with individuals with FXS for a number of reasons, including that they are visual learners, and we need to take advantage of this strength.

Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the illness. People with FXTAS rely on caregivers for a wide range of support — preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money.

Family discussions about the many aspects of Fragile X cannot be boiled down to a single talk. Families do best when there is open and honest communication about Fragile X and we have some tips to help.

Many children with Fragile X syndrome will be able to learn to ride a public bus. Many have ridden a school bus, and some of the skills are transferrable. Find tips and step-by-step instructions to help your child learn to ride a bus independently

When discussing FXS and behavior, it is important to note that — like every person — the focus should not only be on the challenging behaviors you may see. It is essential that parents look at the whole person. Some behaviors may result from the condition, many of which are positive, and they are the behaviors you will see most often.

[This is an archived page referring to the Seaside Arbaclofen (STX209) clinical trial, which was terminated in 2013.] We have experienced a setback with the cancellation of the extension phase of the STX209 drug trials for Fragile X syndrome, and what have been deemed the technical failures of two other ongoing trials of this drug.

[This is an archived page referring to the Seaside Arbaclofen (STX209) clinical trial, which was terminated in 2013.] By now, many of you have heard that Seaside Therapeutics has decided to end the extension of the trial medication Arbaclofen (STX209).