From the Females with Fragile X Syndrome Webinar Series
When: April 14, 2026 @ 7 pm ET
Presenters: Rebecca Shaffer, Debra Reisinger, Nicole Tartaglia, and Jane Roberts
From the Females with Fragile X Syndrome Webinar Series
When: May 12, 2026 @ 7 pm ET
Presenters: Vicki Wilkins, Deby Barbouth, Heather Hipp, and Makenzie Woltz
The Females with Fragile X Syndrome Webinar Series: This series will focus on females, as girls and women sometimes feel neglected and have different needs. The goal is to address any differences or specifics for females with FXS on how to live a healthy life (physically, mentally), navigate puberty & sexuality, and plan for their future. Be on the lookout for more webinars and female-centric content throughout 2026.
Our thanks to the LivJoy Foundation for their passion and partnership, and to Dr. Lauren Jenner for her commitment to research focused on females with Fragile X syndrome.
Helpful Links:
- Learn more about the LivJoy Foundation
- Participate in Dr. Jenner’s research: The SC Family Experiences Study
- Find more research opportunities focused on females with FXS
About the Presenters
Rachel Clouse
Rachel and her husband, Brian, founded LivJoy in 2023 to find, fund, and share programs that enable girls with Fragile X Syndrome to live full, joyful lives. It is the landing point they wished they’d had when searching for answers for their family of girls with Fragile X; they want to help families at all stages of diagnosis and life find both resources and reassurance that others are going through the same experience. The LivJoy Foundation is dedicated to finding and funding resources that enable girls with Fragile X Syndrome to live a life full of joy.
Lauren Jenner
Dr. Jenner completed her master’s at the University of Surrey, United Kingdom, under the supervision of Dr. Joanna Moss and Prof. Emily Farran. Her research focused on social cognition and autism in genetic syndromes, particularly among children and adolescents with Down syndrome and Prader-Willi syndrome.
After her master’s, Lauren continued her work with Dr. Moss as a research associate, contributing to a project on the social-emotional well-being of women with the Fragile X premutation. She also worked on an impact project that provides online training for education practitioners to support the distinct needs of children with genetic syndromes at school.
Lauren’s research interests are currently centered on raising awareness and understanding of autism and related conditions in populations with intellectual disabilities and genetic conditions. She advocates for the inclusion of these often marginalised and overlooked groups in research, promoting the use of more accessible and sensitive methods (such as eye-tracking technology). Her overarching goal is to contribute to a broader understanding of neurodivergence that embraces and supports all people.
Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for several years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s in psychology, an MBA, and was previously a SOCRA-certified clinical research professional (CCRP). She enjoys spending time with her family, including her young daughter and Boston Terrier, as well as curling up with a good book.
