National Fragile X Center at Emory

10/04/2024

Congratulations, Emily! Click on the link below to learn more about Emily's project. Thank you, The National Fragile X Foundation, for funding this project!

🎉🌟 Congratulations to Emily Peery for being awarded the Randi J. Hagerman Summer Scholars Research Award! 🌟🎉

We're incredibly proud of Emily for her outstanding research on Fragile X-associated primary ovarian insufficiency (FXPOI). We can't wait to see how Emily's hard work and dedication this summer will contribute to field of FMR1-associated conditions.

Join us in celebrating this amazing awardee and check out her research here: https://hubs.ly/Q02RSBW90 👏👏

09/16/2024

Celebrating Excellence in Research 🌟 We're thrilled to honor Dr. Emily Allen, this year's esteemed Hagerman Awardee, for her pioneering research at Emory University on Fragile X-associated conditions. Dr. Allen has dedicated her career to understanding and advancing knowledge on disorders linked to the Fragile X premutation, such as FXPOI and FXTAS.

Her work not only sheds light on these conditions but also improves the lives of those affected. A mentor to many, Dr. Allen's contributions go beyond the lab, impacting real-world healthcare experiences for women with Fragile X premutations.

Thank you, Dr. Allen, for your unwavering dedication and groundbreaking achievements! 🏆

08/22/2024

Dr. Amy Talboy and Jean Luan McColl representing the Emory Fragile X Clinic at the NFXF Conference last month in Orlando. Thanks for everyone who stopped by the table!

07/12/2024

⭐ Meet Our RJH Summer Scholars! ⭐

We're proud to highlight Emily Peery, one of our 2024 Randi J. Hagerman Summer Scholars from Emory University's Genetic Counseling Training Program! Emily's research project, 'Women’s Healthcare Provider Knowledge on FXPOI: Improving Understanding Through an Educational Tool,' aims to enhance healthcare through better information dissemination.

🧬 Mentor: Dr. Emily Allen, PhD
🎥 Stay tuned for Emily's comprehensive 15-minute video presentation summarizing her summer research at the end of the season.

We're excited to support Emily’s innovative work that embodies the collaborative spirit essential for advancing Fragile X research. Learn more about the project here: https://hubs.ly/Q02DRbBr0

06/10/2024

Thanks to the NFXF for supporting Emily's Genetic Counseling Program Research Project! Emily is creating an infographic on FXPOI (fragile X-associated primary ovarian insufficiency) to share with women's healthcare providers and testing whether it will increase their knowledge on this important topic.

Join us in congratulating the recipients of the 2024 Randi J. Hagerman Summer Scholars Research Awards!

Every year the NFXF funds four summer projects through the Randi J. Hagerman Summer Scholars Program. These awards are meant to introduce undergraduate and graduate students to research in the Fragile X field by providing funding for a summer project that adds to the body of knowledge around Fragile X in a meaningful way while providing a distinct training experience.

Congratulations to our 2024 RJH Summer Scholars:
🌟Emily Peery, Emory University
🌟Emily Timm, Rush University
🌟Thomas Christensen, University of South Carolina
🌟Manasi Inamdar, University of Illinois

Learn more about the scholars here: https://hubs.ly/Q02B9Ncz0

03/22/2024

Just discovered you or a loved one has the Fragile X premutation? Feeling overwhelmed? You're not alone. Dive into our on-demand webinar, 'I Have the Fragile X Premutation…Now What?' with experts Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl.

This essential resource sheds light on managing risks, advocating for your healthcare needs, and balancing the role of caregiver with your own health and wellness. Remember, prioritizing self-care is not just important—it's necessary.

Whether you're navigating care for a loved one with Fragile X syndrome or looking out for your own health, this webinar offers strategies, support, and understanding. Access it now and take the first step towards informed, compassionate self-care. 👉 https://hubs.ly/Q02q9KK_0

03/14/2024

One of our Emory Genetic Counseling students presented her research project FXS in Toronto at the ACMG meeting. Great work, Paige!

Kudos to Paige Black (Class of 2024) on presenting at ACMG this week in Toronto!

01/25/2024

Andy King's work is highlighted in the most recent Research Roundup from the NFXF:

An estimated 1 in 291 women carry a fragile X premutation (PM) and there is little evidence that this number differs by racial and ethnic background. Yet African American women who have a PM continue to be underrepresented in Fragile X research.

11/11/2023

09/29/2023

Alexandra has been working hard this summer on her Genetic Counseling Focus Project that is investigating the knowledge level of women’s healthcare providers related to FXPOI. We are grateful for the funds from the NFXF which enabled us to recruit in-person at a conference earlier this summer. We look forward to using this work to better educate healthcare providers in the future!

Congratulations to Alexandra, one of our 2023 Summer Scholars!

Alexandra’s project is titled, “FXPOI Survey in Women’s Healthcare Providers”. You can now watch her 15-minute recorded presentation on our website.
When asked about her project, Alexandra shared, “By identifying these gaps in provider knowledge, our goal is to shorten the time to FXPOI diagnosis and improve quality of care for FXPOI patients and their families through provider-focused educational materials that will be created as part of a future project.”

Thanks for your hard work this summer, Alexandra! Keep in touch, we can’t wait to see what your future has in store.

Read the full blog here: https://hubs.ly/Q023tdvs0

09/16/2023

We are excited to share a new publication from Andy King, who recently completed his Master's in Genetic Counseling at Emory. Andy conducted qualitative interviews with African American women who carry a fragile X premutation to better understand their healthcare experiences. Thanks to the Randi J. Hagerman Summer Scholars Research Program from the National Fragile X Foundation and the Georgia Association of Genetic Counselors for supporting this research.

This study aims to understand the healthcare experiences of African American women with a fragile X premutation (PM). PM carriers are at risk for fragile X-associated conditions, including primary ovarian insufficiency (FXPOI) and neuropsychiatric disorders (FXAND). There is no racial/ethnic associa...

08/28/2023

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