NFXF Webinar Series

Females with FXS Webinar Series: Tools & Tactics for Anxiety

00 h 22 m

Experts discuss how anxiety manifests differently across developmental levels, its overlap with depression, and evidence-based treatments, including behavioral and medication approaches. Presenters share practical tools for managing anxiety in school, work, and social settings.

About the Webinar

With Dr. Jane Roberts, Dr. Debra Reisinger, Dr. Nicole Tartaglia, Dr. Rebecca Shaffer, Hilary Rosselot, and Rachel Clouse
Learn more about the presenters

The National Fragile X Foundation and the LivJoy Foundation have come together to host the Females with Fragile X syndrome webinar series. In the first webinar of the series, expert panelists discuss the presentation of anxiety in females with FXS, including how anxiety may be identified, managed, and treated. Importantly, the webinar focused on helpful tools and tactics to manage anxiety across a variety of settings throughout the lifespan.

This webinar defines anxiety and discusses the nuances of how it may present in females living with FXS. Anxiety is described as a “false alarm” response — fine in moderation, but problematic when it disrupts daily life. Anxiety often coexists with hypersensitivity and hyperarousal in FXS. While the presentation of anxiety in females with FXS can vary depending on age and ability, common presentations may include:

  • Repetitive questioning, rigidity, withdrawal, or perfectionism
  • Social anxiety and selective mutism
  • Control-seeking behaviors or avoidance

Importantly, anxiety and depression are distinct but interrelated; untreated anxiety can exacerbate depressive symptoms. Early recognition and treatment are critical.

Many webinar attendees were interested in treatment approaches to anxiety, including pharmacological (drug/medication) and non-pharmacological. The panelists are clear that a combination of the two is likely the best approach, though any type of treatment should be discussed and monitored with the individual’s doctors or care team.

Common non‑medication interventions discussed included:

  • Cognitive Behavioral Therapy (CBT) adapted for developmental level
  • Sensory regulation and occupational therapy (“sensory diets”)
  • Relaxation techniques (breathing, mindfulness, calming breaks)
  • Predictability through visual supports and structured routines

Common medication options included:

  • SSRIs (e.g., sertraline, fluoxetine) as first-line for chronic anxiety
  • Alpha agonists (guanfacine, clonidine) and propranolol for physiological symptoms
  • Short-term benzodiazepines for “as-needed” events (e.g., medical visits, flights)

The panelists then dove into discussing tools & tactics by setting:

At school:

  • Start and end tasks successfully to build confidence
  • Adjust homework timing and environment to the individual’s needs
  • Advocate for IEP accommodations based on the individual, and include them if possible
  • Model tasks visually; focus on strengths and predictability

At the workplace:

  • Schedule calming breaks and decompression routines throughout the shift
  • Choose work and roles aligned with strengths and comfort levels
  • Consider disclosing Fragile X diagnosis when helpful, and seeking accommodations
  • Leverage hybrid or flexible schedules when possible

In social settings and relationships:

  • Practice conversational scripts and role-play interactions beyond “Hi, how are you?”
  • Engage in small, interest-based groups; find your people
  • Begin social skill development early and maintain community engagement; observed risk of agoraphobia in adulthood if social engagement declines

The webinar concluded with panelists sharing highlights and top tips for success, including:

  • Normalizing discussions about anxiety and seeking professional help early
  • Combining behavioral and medical treatments for optimal results
  • Encouraging ongoing advocacy, education, and social participation for females with FXS
  • Monitoring social media use and external stressors that may heighten anxiety
  • Continuing research on female-specific FXS experiences

Our thanks to the LivJoy Foundation for their passion and partnership. We look forward to the next webinar in our series and to more content during and after NFXF’s 20th International Fragile X Conference.

Health, Wellness & Fertility

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 focuses 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.

Helpful Links:

About the Presenters

Dr. Jane Roberts headshot.

Jane Roberts

Psychology McCausland College of Arts and Sciences, University of South Carolina
Carolina Distinguished Professor & Executive Director of the Carolina Autism and Neurodevelopment Research Center

Dr. Jane Roberts received her PhD from the University of North Carolina at Chapel Hill then spent 10 years at UNC as a research investigator and scientist at the FPG Child Development Institute. Her work focuses on understanding the biological mechanisms that underlie cognitive and behavioral functioning in children and adults with neurodevelopmental disorders such as autism, Fragile X syndrome, and AD/HD.

Debra Reisinger

Debra Reisinger

Indiana University School of Medicine
Assistant Professor of Clinical Pediatrics

Dr. Reisinger is a clinical psychologist at Indiana University School of Medicine and Riley Hospital for Children. She completed her postdoctoral training at Cincinnati Children’s Hospital Medical Center and the Cincinnati Fragile X Treatment and Research Center. She has been involved in assessment, treatment, and research in FXS for more than a decade.

Nicole Tartaglia

Nicole Tartaglia

Children’s Hospital Colorado, Colorado School of Medicine
Developmental Pediatrics, Department of Pediatrics

Nicole Tartaglia, MD, attended university and medical school at the University of Colorado. She completed her training in general pediatrics at Children’s Hospital Los Angeles, and fellowship training in developmental-behavioral pediatrics at the University of California Davis MIND Institute, where her research focused on children and adults with developmental disabilities, chromosomal abnormalities, Fragile X syndrome, and autism spectrum disorder. She also obtained her master’s in clinical investigation from the University of Colorado Graduate School.

Since 2007, Dr. Tartaglia has worked as faculty for the Colorado School of Medicine at Children’s Hospital Colorado in the Department of Pediatrics Section of Developmental Pediatrics, where she founded and directs the eXtraordinarY Kids Clinic for children and adolescents with sex chromosome disorders, and is also the director of the Denver Fragile X Clinic. In these clinics, she leads multidisciplinary teams that include medical providers, genetic counseling, psychology, speech-language therapy, occupational therapy, nursing, and social work, and collaborates extensively with community providers, therapists, and schools to provide optimal care for these special populations.  She also evaluates and treats children with general developmental delays, autism spectrum disorder, ADHD, and other neurogenetic disorders.

Dr. Tartaglia has federally funded research projects evaluating natural history and outcome measures in sex chromosome disorders and Fragile X and collaborates with national networks of clinics to develop best practices for treatments of these conditions. She is also very active in clinical trials of targeted treatment medications for neurobehavioral features and developmental disabilities. Dr. Tartaglia is also a member of the NFXF’s Clinical Trials Committee.

Rebecca Shaffer

Rebecca Shaffer

Cincinnati Children’s Hospital
Clinical Psychologist and Professor, UC Department of Pediatrics

Rebecca Shaffer, PsyD, HSPP, is a professor of pediatrics at Cincinnati Children’s Hospital, and she specializes in both clinical care and research with Fragile X syndrome and autism spectrum disorder. She is also the director of psychological services for the Cincinnati Fragile X Center. Her research is primarily focused on emotion dysregulation in both FXS and ASD. She enjoys helping individuals find ways to calm their bodies and minds and fully engage in the world around them. She also enjoys helping caregivers find ways to best support them in this process. “It is truly a pleasure to work with the Fragile X population and their families.”

Hilary Rosselot, Executive Director

Hilary Rosselot

National Fragile X Foundation
Executive Director

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.

Rachel Clouse headshot.

Rachel Clouse

LivJoy Foundation
President & Cofounder

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.