NFXF Blog

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A group lifts their arms to the sky celebrating the amazing new CDC opportunity and grant to help inform more people about FXS.
  • NFXF & Programs
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NFXF Awarded $1 Million CDC Grant to Expand Resources, Support, and Healthcare Capacity for the Fragile X Community

October 1, 2026
03 mins read

The initiative will build on our 40 years of work, promoting broader use of evidence-based information among individuals with FXS, caregivers, family members, community partners, and healthcare providers nationwide.

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LATEST IN: Caregiving
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Why Fragile X Syndrome Treatment Information Feels So Confusing
September 24, 2026

08 mins read

FXS Tips & Support for Traveling + Free Downloads
June 24, 2026

06 mins read

LATEST IN: Advocacy
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Advocacy is Year-Round: What That Looks Like
October 1, 2026

05 mins read

Understanding What the Texas v. Kennedy Ruling Means for Community Living
September 28, 2026

03 mins read

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Infant's feet.
Symposium Summary: Prenatal and Newborn Screening in Fragile X Syndrome
September 16, 2026
05 mins read

Carme Torrents, MD, a 2026 Jr. Investigators Awardee, summarizes an important symposium by Drs. Elizabeth Smith, Tatyana Adayev, and Anne Wheeler, during the 20th International Fragile X Conference.

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Laurn Tiare Kuperman graduating.
FXTAS Neuromotor Signs in Women with the FMR1 Premutation: Elevated Risk at Mid-Range CGGs and Attenuation by College Degree Attainment
September 9, 2026
04 mins read

Tetsuya Asano, a 2026 Jr. Investigators Awardee, summarizes an important talk by Jessica Klusek during the 20th International Fragile X Conference.

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Healthcare Experiences of African American Women with a Fragile X Premutation
January 19, 2024
07 mins read
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The Effect of College Degree Attainment on Neurodegenerative Symptoms in Genetically At-Risk Women
June 7, 2023
06 mins read

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

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FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers
May 19, 2023
08 mins read

Research is needed that includes more racially and ethnically diverse participants. This study relied on self-reports to measure cognition.

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The diagnostic experience of women with fragile X–associated primary ovarian insufficiency (FXPOI)
May 19, 2023
08 mins read
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A family, mom, dad, and child, gathered together.
Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
September 2, 2021
09 mins read

Many families struggle with deciding when the “right” time is and what to say. Here are some strategies to help in having a conversation with your daughter about her Fragile X syndrome diagnosis.

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Clustering of Comorbid Conditions Among Women Who Carry an FMR1 Premutation
October 23, 2020
11 mins read
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Inhibition Deficits Are Modulated by Age and CGG Repeat Length in Carriers of the FMR1 Premutation Allele Who Are Mothers of Children with Fragile X Syndrome
October 22, 2020
10 mins read
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