News and information from the National Fragile X Foundation about Fragile X syndrome, FXTAS, FXPOI and the other Fragile X-associated disorders
Joined August 2009
- Tweets 2,812
- Following 1,191
- Followers 2,664
- Likes 171
1,020 Photos and videos
Jun 1
🔔 Looking for males ages 12–19 with FXS for at-home sleep study!
Participation includes:
• At-home sleep headband for 3 nights
• Questionnaires & sleep diaries
• 2 *optional* in-person visits
More info:
🖱️ hubs.ly/Q04jwbQ-0
📧 mghluriecentersleepheadbandstudy@mgb.org
1
52
May 26
If you are a man 50 w/ the premutation (no FXTAS) — or if you know one — researchers at the MIND Institute & University of Maryland have a message on getting involved in crucial research.
🎥 Watch this video to learn more & help move research forward!
hubs.ly/Q04hXc8R0
1
33
May 20
Meet the 2026 Jr. Investigator Awardees 💚These rising researchers are helping shape the future of Fragile X research. We can’t wait to see them present their work at the 20th NFXF International Fragile X Conference this July!
hubs.ly/Q04hnrxT0
45
May 13
Shionogi has released updates from the EXPERIENCE clinical trials for Fragile X. Read the full update 👉 fragilex.org/research-fx/upd…
Join @NFXF, @FRAXA and @Shionogi
for a community Q&A: 📷 May 19, 2026 | 12 PM ET Register & submit your questions here 📷hubs.ly/Q04gr5Xc0
59
Apr 27
🔔RESEARCH OPPORTUNITY FOR GIRLS w/ FXS🔔
Girls 8-12 living w/ FXS or ASD are invited to join a study by UW–Madison Waisman Center & UC Davis MIND Institute.
The study includes 2 in-person visits over 2 yrs & language & behavioral testing.
More here! 👉 hubs.ly/Q04dydpC0
110
Mar 30
If you are a man 50 w/ the premutation (no FXTAS) — or if you know one — researchers at the MIND Institute & University of Maryland have a message on getting involved in crucial research.
🎥 Watch this video to learn more & help move research forward!
hubs.ly/Q048QKWH0
88
Mar 19
Research Opportunity for Parents!
Are you a parent of a 2-12 y/o with a genetic syndrome & intellectual disability? Join the WINGS Study, a remote intervention helping parents develop strategies for managing challenging behaviors!
Learn more: hubs.ly/Q047rXxT0
79
Mar 12
Fragile X has been included in the FY26 PRMRP authorized topic list, which ensures that researchers can apply for DoW awards supporting Fragile X research. Grateful to Senators Cindy Hyde-Smith, Cory Booker, Roger Wicker and Alex Padilla for supporting this effort.
1
115
Feb 20
📣 Mothers Living with Full Mutation Fragile X
Researchers at University of South Carolina are studying aging to improve diagnosis & support. Assessments include questionnaires & genetic testing.
No travel required & compensation provided!
Learn more 🌐 hubs.ly/Q043mPPG0
1
72
Feb 18
PIXI Study now recruiting 👶
PIXI offers 20 telehealth early intervention sessions for families of infants with Fragile X syndrome. Through the study, you can get support understanding your child’s diagnosis coaching on early strategies.
Learn more 🔗 hubs.ly/Q043zD5m0
1
1
76
Feb 5
The Fragile X community thanks @SenMcConnell @ChrisCoons @SenCapito @SenatorBaldwin @CoryBooker @SenHydeSmith @SenAlexPadilla and their committees for support in securing funding for FX research. Your bipartisan leadership is recognized & appreciated by the Fragile X community.
1
2
72
Feb 5
The Fragile X community thanks @Robert_Aderholt, @rosadelauro, @RepJoeCourtney, Congressman Chris Smith, and their committees for their support in securing funding for Fragile X research. Your bipartisan leadership is recognized and appreciated by the Fragile X community.
1
4
105
24 Nov 2025
Are you a caregiver of a female between 6-12 y/o? Researchers @ NY State Institute for Basic Research need your help!
🖱️Take two short surveys that explore physical symptoms — like pain or fatigue — in girls with & without FMR1 gene variations.
More ➡️ hubs.ly/Q03Sw94S0
146
11 Nov 2025
Caregiver of a female, 6-12 years old?
Researchers at the NY State Institute for Basic Research need your help!
🖱️Take two short surveys that explore physical symptoms — like pain or fatigue — in girls with & without FMR1 gene variations.
Learn more: hubs.ly/Q03SwcjP0
139
6 Nov 2025
🌟Research Opportunity for Caregivers🌟
If you care for someone w/ Fragile X syndrome, we want to hear from you! Researchers at Baylor College of Medicine are studying caregiver experiences with clinics.
🖊️ Take a 15–30 min survey & help improve care!
👉 hubs.ly/Q03NspK20
173
31 Oct 2025
Spotlight on 🌟 Shelby Dauterman🌟
Meet Shelby, one of our 2025 RJH Summer Scholars!
Her project explores neurovascular coupling in Fragile X syndrome to help inform new treatment strategies.
🎥 Watch her presentation here: hubs.ly/Q03NLx320
#FragileX #StudentResearch
1
126
24 Oct 2025
Spotlight on 🌟 Tanvi Kamra 🌟
Meet Tanvi, one of our 2025 RJH Summer Scholars!
Her project explores postmortem brain data to better understand Fragile X-associated conditions.
🎥Watch her presentation here: hubs.ly/Q03NKVdD0
#FragileX #StudentResearch #FragileXResearch
2
140
17 Oct 2025
Spotlight on 🌟 Susana Lopez-Ignacio 🌟
Meet Susana, one of our 2025 RJH Summer Scholars! Her summer project explores how X-chromosome inactivation affects FXTAS.
🎥 Watch her 15-minute presentation here: hubs.ly/Q03NtvT30
#FragileX #StudentResearch #FragileXResearch
2
125
15 Oct 2025
🌟Research Opportunity for Caregivers🌟
If you care for someone w/ Fragile X syndrome, we want to hear from you! Researchers at Baylor College of Medicine are studying caregiver experiences with clinics.
🖊️ Take a 15–30 min survey & help improve care!
👉 hubs.ly/Q03NslFh0
126
13 Oct 2025
👀 on CONNECTA Therapeutics!
This biotech company is taking a fresh approach to #FragileX research! Their lead medicine aims to boost the brain’s ability to form & strengthen connections.
Read more about CONNECTA & what's next for their research: hubs.ly/Q03MZz1-0
98