National Fragile X Foundation

🚀 Exciting Opportunity Alert! 🚀 Researchers at Rush University are seeking participants for a study that is testing an innovative technology! This new technology aims to improve how to identify and track progress being made in children living with autism and Fragile X syndrome. The study is currently recruiting children ages 18 months-5 years, and 12-18 years and includes only 1 research visit and 1 phone call. Researchers can come to you if you are unable to come to the research site! Interested or want to learn more? Scan & follow the QR code or click here ➡️ https://hubs.ly/Q02VZRBF0 #FXS #ResearchStudy #FXSResearch

🎉🌟 Congratulations to Manasi Inamdar for being awarded the Randi J. Hagerman Summer Scholars Research Award! 🌟🎉 Manasi worked hard over the summer and we are incredibly proud of her for her amazing research on Fragile X syndrome. Manasi's work and dedication this summer will positively contribute to the field of FXS research! Join us in celebrating this amazing awardee and check out her research here: https://hubs.ly/Q02RS5wR0 👏👏 #SummerScholarship #ResearchExcellence #FutureLeader #FXResearch

Upcoming Professional Development Opportunity: Navigating Challenging Behaviors in Fragile X - November 20, 2024, from 7 PM – 8 PM EST. Join our panelists Tracy Stackhouse, Lauren Moskowitz, Jennifer Epstein, and Missy Zolecki for a dynamic discussion on managing aggressive behaviors in adolescents and adults. This webinar will provide practical strategies for identifying and safely intervening in challenging situations. While the session excludes medication discussions, it will offer invaluable behavioral insights for parents, caregivers, and professionals. Register today to enhance your understanding and skills in managing complex behaviors with confidence and empathy. https://hubs.ly/Q02TKWrH0 #ProfessionalDevelopment #FragileX #BehaviorManagement

The Kelleher Lab at Purdue University is conducting a virtual, NIH-funded clinical trial called Project WellCAST. The trial aims to understand how to best support caregivers of children with rare conditions, like Fragile X syndrome (FXS). Caregivers of people ages 2-35 with FXS (or other rare neurogenetic conditions like Angelman Syndrome or Prader Willi Syndrome) may be eligible to participate. Participants complete all of study procedures from home; no travel is required! Support programs are delivered via telehealth, and forms are online and can be completed from your smartphone/computer. Participants can also receive up to $100 based on completion of forms. Any resources or support program you receive are provided free of charge, including any materials. Interested? Learn more and contact the study team today: https://hubs.ly/Q02TL1C60

Clinical trials help us develop new medicines and treatments that we hope will benefit a particular population of patients. Trials are designed and conducted in a very particular way in order to maximize the information we gain about the benefits and side effects of a particular treatment. Clinical trials rely on participation from members of the community like you. And if you join a trial, that's great! You might want to tell friends, family and people in your online community about it. And while sharing with others may help get folks involved or interested in research, we must remember that words are powerful! With the help of clinical trial sites, specifically Dr. Wilkins and her research team at The University of Utah & Primary Children’s Hospital, we have put together a few ⭐dos & don’ts⭐ to help guide you when deciding what information to share about the research you are participating in and what information you should keep more private. Read up on the dos & don't here: https://hubs.ly/Q02TKXVl0 #FragileX #FragileXawareness

🎉🌟 Congratulations to Emily Timm for being awarded the Randi J. Hagerman Summer Scholars Research Award! 🌟🎉 Emily spent her summer researching brain activity in people affected by FXTAS. We can't wait to see how all of her hard work and dedication will contribute to the field of researching FMR1-associated conditions. Join us in celebrating this incredible scholar and learn more about her research here: https://hubs.ly/Q02RS9km0 👏👏 #SummerScholarship #ResearchExcellence #FutureLeader #FXResearch

‼️Research Opportunity for Adults Living with FXTAS‼️ Are you - or someone you know - an adult over 50 years old living with FXTAS? If so, movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation during tasks like walking and thinking in people living with FXTAS. The study involves just one visit to Rush University Medical Center in Chicago, IL. Participants can receive a $100 Visa gift card for completing the study. Interested? Learn more and contact the study team today by following this link: https://hubs.ly/Q02SZK2l0

Calling all parents and caregivers of children ages 2-12 living with Fragile X Syndrome (or other genetic syndromes) who are facing challenging behaviors 📣 Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are recruiting for a 🔸fully-virtual🔸 research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors. Participation is completely virtual and participants can receive up to $300 for their time and efforts in completing study visits. Learn more here: https://hubs.ly/Q02TlnZ50

🎉🌟 Congratulations to Thomas Christensen for being awarded the Randi J. Hagerman Summer Scholars Research Award! 🌟🎉 We're incredibly proud of Thomas for his important research on how environments and neighborhoods can affect the health of women living with the FMR1 premutation. We can't wait to see how Thomas's hard work and dedication this summer add to the field of researching FMR1-associated conditions. Join us in celebrating this spectacular scholar and check out his research here: https://hubs.ly/Q02RSvtS0 👏👏 #SummerScholarship #ResearchExcellence #FutureLeader #FXResearch

Celebrating International Fragile X Awareness Day with the Fragile X community around the globe. #fragilexawareness