Fragile X Syndrome & Associated Premutation Conditions Webinars
Here we present all webinars, including our conference panels and presentations, organized from newest to oldest. Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Genetics of Fragile X — Webinar
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
2025 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys
In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.
Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Females with Fragile X Syndrome — Webinar
Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.
Lunch & Learn Series: “Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS” and “Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort”
Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann joined us for a 45-minute webinar where they presented on two of the "top 10 most-cited articles" in the American Journal of Medical Genetics Part A. Presentations were then followed by a moderated Q&A.
Lunch & Learn Series: FMR1 Carriers Report Executive Function Changes Prior to FXTAS: A Longitudinal Study
David Hessl, PhD, joined us for a 45-minute webinar where he presented the results of a longitudinal study focusing on executive function changes in people with the FMR1 premutation. The presentation was followed by a moderated Q&A.
Financially Empowering the Fragile X Community Through ABLE Accounts — Webinar
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.
10 Basic Financial Steps for Special Needs Caregivers — Webinar
Kelly Piacenti joined us for the next topic of the NFXF Webinar Series -10 Basic Financial Steps for Special Needs Caregivers. She shared information to help caregivers get started in preparing for the financial future of their loved one with Fragile X.
Peer-Reviewed Medical Research Program’s FY 24 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
I Have the Fragile X Premutation…Now What?— Webinar
Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl joined us for a one-hour Q & A discussing the Fragile X Premutation.
Lunch & Learn Series: Single-Dose Medication Study Results in Fragile X Syndrome
Dr. Craig Erickson joined us for a 45-minute webinar where he presented the results of a single-dose medication study in FXS and then answered questions during a moderated Q&A.
2024 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
Introductory Discussion on Estate Planning — Webinar
We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.
Multidisciplinary Treatment of Fragile X Syndrome (FXS) — Webinar
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
Fragile X-associated Tremor/Ataxia Syndrome — Webinar
Drs. Deborah Hall and Peter Todd joined us for an informative webinar on the topic of Fragile X-associated Tremor/Ataxia syndrome (FXTAS).
Employment Strategies and Successes — Webinar
In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!
FORWARD-MARCH 2023 — Webinar
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
2023 Industry Updates — Webinar
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
Education Strategies for Success — Webinar
Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!
Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences — Webinar
Adult housing options and support services may be limited and difficult to access. A group of parents shared their firsthand experiences supporting their loved one with Fragile X determine a suitable living situation.
Aging in Fragile X Syndrome — Webinar
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
Females with FXS: Strategies for Developing Executive Functioning and Social Skills — Webinar
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
2023 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
Using Visual Strategies to Support Daily Function — Presentation
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.
The Progression of Pathology in Longitudinally Followed Patients with FXTAS — Presentation
Learn in this webinar the pathological progression of several longitudinally followed patients with FXTAS at the UC Davis Fragile X Research and Treatment Center.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Fragile X Medications — Panel
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome — Presentation
This session discusses specific challenges that arise during puberty and adolescence while also providing youth and their caregivers with some strategies and resources to assist in navigating the teenage years. Presented by Holly Harris, MD, FAAP and Dinah Godwin, LCSW.
Improving Sleeping in Children & Youth with Fragile X Syndrome — Presentation
This conference session discusses common sleep problems and some strategies for treating them in children with FXS, including assessments, behavioral techniques, and medications commonly used to treat sleep problems. Presented by Carol Delahunty, MD.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Common Behaviors and Available Treatments Across the Lifespan — Presentation
How to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips are shared that families can easily implement with their children or adolescents.
Experts Discuss Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) — Panel
Explore this premutation webinar to learn more about Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS) with our expert panel: Peter K. Todd, MD, Randi J. Hagerman, MD, David Hessl, PhD, and Dr. Deborah A. Hall, MD.
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills — Presentation
This session discusses specific strategies to help promote and support essential social skills for those with Fragile X. Presented by Barbara Haas-Givler.
Experts Discuss Education Strategies for Fragile X Syndrome — Panel
Explore this deep dive into education strategies for Fragile X syndrome. Moderated by Linda Sorensen and featuring Tracy Murnan Stackhouse and Anne Hoffmann.
Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
Transitioning to Independence in Adulthood: What Helps? What Hurts? — Panel
A panel of experts present research-based information on the factors that promote or hinder the transition to independence of young adults with FXS after completion of high school and formal education. Panelists Leonard Abbeduto, Jessica Klusek, Angie Thurman, and Julie Lounds Taylor also take questions from the audience.
Emotional Regulation in Fragile X Syndrome — Presentation
Rebecca Shaffer discusses the signs of emotion dysregulation in Fragile X syndrome and ways to respond and practical strategies for families and caregivers.
Encouraging Early Communication: Strategies for Caregivers — Presentation
This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development. Presented by Anne Hoffman from Rush University Medical Center.
2022 Industry Updates — Presentation
It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Keynote: Clinical Trials in Fragile X Syndrome — Presentation
This keynote session explore completed and active clinical trials relating to Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Craig A. Erickson, and Randi J. Hagerman.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
Fragile X Premutation Discussion — Panel
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
Advancing Our Understanding and Future Treatment of FXTAS — Webinar
Experts Deborah Hall, Maureen Leehey, Peter Todd, and Nancy Hertzig discuss the latest in FXTAS research and treatment.
2022 Medications Update — Webinar
Jayne Dixon Weber and Dr. Craig Erickson discuss new medications and review existing medications used for various issues related to Fragile X syndrome.
Using Mindfulness and Acceptance Techniques to Reduce Stress — Webinar
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
Females and Fragile X Syndrome — Webinar
Dr. Braden helps us understand the difference between males and females with Fragile X syndrome as well as strategies for common challenges for females that include executive functioning and relationships.
The Genetics of Fragile X Disorders
Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.
What Weʼve Learned from FORWARD About Aging in Fragile X Syndrome — Webinar
Dr. Elizabeth Berry-Kravis discusses the FORWARD database and its role in understanding problems that face adults living with Fragile X syndrome.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
Emily Allen discusses some of the health concerns of women who are premutation carriers and shares research findings from her group at Emory University.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Caring for Adults with Fragile X Syndrome — Panel
Our panel discussion from the 2020 conference on adult issues in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Marcia Braden, Jayne Dixon Weber, Craig Erickson, and Randi Hagerman.
Medications for Fragile X: Anxiety, Irritable Behaviors & Aggression — Presentation
Drs. Berry-Kravis and Erickson discuss currently available supportive medications for treating anxiety and irritable, agitated, and aggressive behaviors in Fragile X syndrome.
Premutation Carrier Concerns — Panel
Panelists Randi Hagerman, Heather Hipp, Emily Allen, and Marsha Mailick helps answer what it means for your health, your family, and your future at the 17th International Fragile X Conference.
Fragile X-Associated Tremor/Ataxia Syndrome 101 — Presentation
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
Reproductive and Gynecologic Care for Women with the Fragile X Premutation — Presentation
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Mindfulness and Me — Webinar
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
My Child is Home… Now What?? Play Skills
In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Estate Planning: Special Needs Planning for Individuals and Caregivers — Webinar
Learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits.
Guardianship for Special Needs Individuals and Caregivers — Webinar
Learn about if and when guardianship should be considered and the requirements needed, plus less restrictive alternatives, such as financial and healthcare powers of attorney.
Participating in Research Studies and Trials — Webinar
Hilary Rosselot gives advice and guidance to participating in research studies and clinical trials. She is also joined by two Fragile X moms who have participated in several studies and trials and share their perspectives and advice.
Moving from Pediatrics to Adult Services — Webinar
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
Autism Spectrum Disorder in Fragile X Syndrome: Co-Occurring Conditions and Current Treatment — Webinar
Individuals with a dual diagnosis of Fragile X syndrome and autism have reported greater cognitive and behavioral impairment. With Dr. Walter E. Kaufmann.
Genetics 101: Fragile X Inheritance — Webinar
Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.
Adult Living Situations and Fragile X — Webinar
As your child gets older, there are many decisions to be made. One of the biggest decisions is determining the best living situation for your young adult.
FXS Autism and Behavior with Mouse and Tracy — Valentineʼs Day Edition — Webinar
Love is in the air! Our very good friends from Developmental FX join us to answer questions about Fragile X and behavior.
Fragile X Premutation With Dr. Randi Hagerman — Webinar
Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!
NFXF Webinar: Being Prepared for Adulthood
Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.
Let's Talk FXS, Autism & Behavior with Tracy & Mouse
Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!
Let's Talk Fragile X Premutation Carriers and Health
Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.
Let's Talk Behavior and FXS
Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.
Let's Talk Medication For Fragile X Syndrome
Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.
These are all of our available conference panels and presentations.
Using Visual Strategies to Support Daily Function — Presentation
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.
The Progression of Pathology in Longitudinally Followed Patients with FXTAS — Presentation
Learn in this webinar the pathological progression of several longitudinally followed patients with FXTAS at the UC Davis Fragile X Research and Treatment Center.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Fragile X Medications — Panel
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome — Presentation
This session discusses specific challenges that arise during puberty and adolescence while also providing youth and their caregivers with some strategies and resources to assist in navigating the teenage years. Presented by Holly Harris, MD, FAAP and Dinah Godwin, LCSW.
Improving Sleeping in Children & Youth with Fragile X Syndrome — Presentation
This conference session discusses common sleep problems and some strategies for treating them in children with FXS, including assessments, behavioral techniques, and medications commonly used to treat sleep problems. Presented by Carol Delahunty, MD.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Common Behaviors and Available Treatments Across the Lifespan — Presentation
How to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips are shared that families can easily implement with their children or adolescents.
Experts Discuss Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) — Panel
Explore this premutation webinar to learn more about Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS) with our expert panel: Peter K. Todd, MD, Randi J. Hagerman, MD, David Hessl, PhD, and Dr. Deborah A. Hall, MD.
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills — Presentation
This session discusses specific strategies to help promote and support essential social skills for those with Fragile X. Presented by Barbara Haas-Givler.
Experts Discuss Education Strategies for Fragile X Syndrome — Panel
Explore this deep dive into education strategies for Fragile X syndrome. Moderated by Linda Sorensen and featuring Tracy Murnan Stackhouse and Anne Hoffmann.
Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
2022 Industry Updates — Presentation
It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
Fragile X Premutation Discussion — Panel
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
Emily Allen discusses some of the health concerns of women who are premutation carriers and shares research findings from her group at Emory University.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Caring for Adults with Fragile X Syndrome — Panel
Our panel discussion from the 2020 conference on adult issues in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Marcia Braden, Jayne Dixon Weber, Craig Erickson, and Randi Hagerman.
Medications for Fragile X: Anxiety, Irritable Behaviors & Aggression — Presentation
Drs. Berry-Kravis and Erickson discuss currently available supportive medications for treating anxiety and irritable, agitated, and aggressive behaviors in Fragile X syndrome.
Premutation Carrier Concerns — Panel
Panelists Randi Hagerman, Heather Hipp, Emily Allen, and Marsha Mailick helps answer what it means for your health, your family, and your future at the 17th International Fragile X Conference.
Fragile X-Associated Tremor/Ataxia Syndrome 101 — Presentation
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
Reproductive and Gynecologic Care for Women with the Fragile X Premutation — Presentation
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
NFXF regularly schedules webinars for the Fragile X community. In addition, we share presentations and panel recordings from our biennial NFXF International Fragile X Conferences. If there are topics you’d like to see more resources for, we’d love to hear from you.
Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.
All Webinars: All recordings from our ongoing webinars series’ and NFXF International Fragile X Conference panels and presentations.
Conference Sessions: NFXF International Fragile X Conference panels and presentations only.
Here we present all webinars, including our conference panels and presentations, organized from newest to oldest. Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Genetics of Fragile X — Webinar
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
2025 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys
In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.
Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Females with Fragile X Syndrome — Webinar
Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.
Lunch & Learn Series: “Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS” and “Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort”
Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann joined us for a 45-minute webinar where they presented on two of the "top 10 most-cited articles" in the American Journal of Medical Genetics Part A. Presentations were then followed by a moderated Q&A.
Lunch & Learn Series: FMR1 Carriers Report Executive Function Changes Prior to FXTAS: A Longitudinal Study
David Hessl, PhD, joined us for a 45-minute webinar where he presented the results of a longitudinal study focusing on executive function changes in people with the FMR1 premutation. The presentation was followed by a moderated Q&A.
Financially Empowering the Fragile X Community Through ABLE Accounts — Webinar
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.
10 Basic Financial Steps for Special Needs Caregivers — Webinar
Kelly Piacenti joined us for the next topic of the NFXF Webinar Series -10 Basic Financial Steps for Special Needs Caregivers. She shared information to help caregivers get started in preparing for the financial future of their loved one with Fragile X.
Peer-Reviewed Medical Research Program’s FY 24 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
I Have the Fragile X Premutation…Now What?— Webinar
Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl joined us for a one-hour Q & A discussing the Fragile X Premutation.
Lunch & Learn Series: Single-Dose Medication Study Results in Fragile X Syndrome
Dr. Craig Erickson joined us for a 45-minute webinar where he presented the results of a single-dose medication study in FXS and then answered questions during a moderated Q&A.
2024 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
Introductory Discussion on Estate Planning — Webinar
We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.
Multidisciplinary Treatment of Fragile X Syndrome (FXS) — Webinar
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
Fragile X-associated Tremor/Ataxia Syndrome — Webinar
Drs. Deborah Hall and Peter Todd joined us for an informative webinar on the topic of Fragile X-associated Tremor/Ataxia syndrome (FXTAS).
Employment Strategies and Successes — Webinar
In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!
FORWARD-MARCH 2023 — Webinar
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
2023 Industry Updates — Webinar
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
Education Strategies for Success — Webinar
Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!
Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences — Webinar
Adult housing options and support services may be limited and difficult to access. A group of parents shared their firsthand experiences supporting their loved one with Fragile X determine a suitable living situation.
Aging in Fragile X Syndrome — Webinar
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
Females with FXS: Strategies for Developing Executive Functioning and Social Skills — Webinar
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
2023 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
Using Visual Strategies to Support Daily Function — Presentation
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.
The Progression of Pathology in Longitudinally Followed Patients with FXTAS — Presentation
Learn in this webinar the pathological progression of several longitudinally followed patients with FXTAS at the UC Davis Fragile X Research and Treatment Center.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Fragile X Medications — Panel
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome — Presentation
This session discusses specific challenges that arise during puberty and adolescence while also providing youth and their caregivers with some strategies and resources to assist in navigating the teenage years. Presented by Holly Harris, MD, FAAP and Dinah Godwin, LCSW.
Improving Sleeping in Children & Youth with Fragile X Syndrome — Presentation
This conference session discusses common sleep problems and some strategies for treating them in children with FXS, including assessments, behavioral techniques, and medications commonly used to treat sleep problems. Presented by Carol Delahunty, MD.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Common Behaviors and Available Treatments Across the Lifespan — Presentation
How to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips are shared that families can easily implement with their children or adolescents.
Experts Discuss Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) — Panel
Explore this premutation webinar to learn more about Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS) with our expert panel: Peter K. Todd, MD, Randi J. Hagerman, MD, David Hessl, PhD, and Dr. Deborah A. Hall, MD.
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills — Presentation
This session discusses specific strategies to help promote and support essential social skills for those with Fragile X. Presented by Barbara Haas-Givler.
Experts Discuss Education Strategies for Fragile X Syndrome — Panel
Explore this deep dive into education strategies for Fragile X syndrome. Moderated by Linda Sorensen and featuring Tracy Murnan Stackhouse and Anne Hoffmann.
Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
Transitioning to Independence in Adulthood: What Helps? What Hurts? — Panel
A panel of experts present research-based information on the factors that promote or hinder the transition to independence of young adults with FXS after completion of high school and formal education. Panelists Leonard Abbeduto, Jessica Klusek, Angie Thurman, and Julie Lounds Taylor also take questions from the audience.
Emotional Regulation in Fragile X Syndrome — Presentation
Rebecca Shaffer discusses the signs of emotion dysregulation in Fragile X syndrome and ways to respond and practical strategies for families and caregivers.
Encouraging Early Communication: Strategies for Caregivers — Presentation
This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development. Presented by Anne Hoffman from Rush University Medical Center.
2022 Industry Updates — Presentation
It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Keynote: Clinical Trials in Fragile X Syndrome — Presentation
This keynote session explore completed and active clinical trials relating to Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Craig A. Erickson, and Randi J. Hagerman.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
Fragile X Premutation Discussion — Panel
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
Advancing Our Understanding and Future Treatment of FXTAS — Webinar
Experts Deborah Hall, Maureen Leehey, Peter Todd, and Nancy Hertzig discuss the latest in FXTAS research and treatment.
2022 Medications Update — Webinar
Jayne Dixon Weber and Dr. Craig Erickson discuss new medications and review existing medications used for various issues related to Fragile X syndrome.
Using Mindfulness and Acceptance Techniques to Reduce Stress — Webinar
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
Females and Fragile X Syndrome — Webinar
Dr. Braden helps us understand the difference between males and females with Fragile X syndrome as well as strategies for common challenges for females that include executive functioning and relationships.
The Genetics of Fragile X Disorders
Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.
What Weʼve Learned from FORWARD About Aging in Fragile X Syndrome — Webinar
Dr. Elizabeth Berry-Kravis discusses the FORWARD database and its role in understanding problems that face adults living with Fragile X syndrome.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
Emily Allen discusses some of the health concerns of women who are premutation carriers and shares research findings from her group at Emory University.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Caring for Adults with Fragile X Syndrome — Panel
Our panel discussion from the 2020 conference on adult issues in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Marcia Braden, Jayne Dixon Weber, Craig Erickson, and Randi Hagerman.
Medications for Fragile X: Anxiety, Irritable Behaviors & Aggression — Presentation
Drs. Berry-Kravis and Erickson discuss currently available supportive medications for treating anxiety and irritable, agitated, and aggressive behaviors in Fragile X syndrome.
Premutation Carrier Concerns — Panel
Panelists Randi Hagerman, Heather Hipp, Emily Allen, and Marsha Mailick helps answer what it means for your health, your family, and your future at the 17th International Fragile X Conference.
Fragile X-Associated Tremor/Ataxia Syndrome 101 — Presentation
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
Reproductive and Gynecologic Care for Women with the Fragile X Premutation — Presentation
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Mindfulness and Me — Webinar
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
My Child is Home… Now What?? Play Skills
In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Estate Planning: Special Needs Planning for Individuals and Caregivers — Webinar
Learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits.
Guardianship for Special Needs Individuals and Caregivers — Webinar
Learn about if and when guardianship should be considered and the requirements needed, plus less restrictive alternatives, such as financial and healthcare powers of attorney.
Participating in Research Studies and Trials — Webinar
Hilary Rosselot gives advice and guidance to participating in research studies and clinical trials. She is also joined by two Fragile X moms who have participated in several studies and trials and share their perspectives and advice.
Moving from Pediatrics to Adult Services — Webinar
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
Autism Spectrum Disorder in Fragile X Syndrome: Co-Occurring Conditions and Current Treatment — Webinar
Individuals with a dual diagnosis of Fragile X syndrome and autism have reported greater cognitive and behavioral impairment. With Dr. Walter E. Kaufmann.
Genetics 101: Fragile X Inheritance — Webinar
Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.
Adult Living Situations and Fragile X — Webinar
As your child gets older, there are many decisions to be made. One of the biggest decisions is determining the best living situation for your young adult.
FXS Autism and Behavior with Mouse and Tracy — Valentineʼs Day Edition — Webinar
Love is in the air! Our very good friends from Developmental FX join us to answer questions about Fragile X and behavior.
Fragile X Premutation With Dr. Randi Hagerman — Webinar
Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!
NFXF Webinar: Being Prepared for Adulthood
Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.
Let's Talk FXS, Autism & Behavior with Tracy & Mouse
Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!
Let's Talk Fragile X Premutation Carriers and Health
Fragile X premutation carriers have long expressed concern over issues they might be facing because of having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.
Let's Talk Behavior and FXS
Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.
Let's Talk Medication For Fragile X Syndrome
Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.
These are all of our available conference panels and presentations.
Using Visual Strategies to Support Daily Function — Presentation
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.
The Progression of Pathology in Longitudinally Followed Patients with FXTAS — Presentation
Learn in this webinar the pathological progression of several longitudinally followed patients with FXTAS at the UC Davis Fragile X Research and Treatment Center.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Fragile X Medications — Panel
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome — Presentation
This session discusses specific challenges that arise during puberty and adolescence while also providing youth and their caregivers with some strategies and resources to assist in navigating the teenage years. Presented by Holly Harris, MD, FAAP and Dinah Godwin, LCSW.
Improving Sleeping in Children & Youth with Fragile X Syndrome — Presentation
This conference session discusses common sleep problems and some strategies for treating them in children with FXS, including assessments, behavioral techniques, and medications commonly used to treat sleep problems. Presented by Carol Delahunty, MD.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Common Behaviors and Available Treatments Across the Lifespan — Presentation
How to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips are shared that families can easily implement with their children or adolescents.
Experts Discuss Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) — Panel
Explore this premutation webinar to learn more about Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS) with our expert panel: Peter K. Todd, MD, Randi J. Hagerman, MD, David Hessl, PhD, and Dr. Deborah A. Hall, MD.
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills — Presentation
This session discusses specific strategies to help promote and support essential social skills for those with Fragile X. Presented by Barbara Haas-Givler.
Experts Discuss Education Strategies for Fragile X Syndrome — Panel
Explore this deep dive into education strategies for Fragile X syndrome. Moderated by Linda Sorensen and featuring Tracy Murnan Stackhouse and Anne Hoffmann.
Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
2022 Industry Updates — Presentation
It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
Fragile X Premutation Discussion — Panel
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
Emily Allen discusses some of the health concerns of women who are premutation carriers and shares research findings from her group at Emory University.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Caring for Adults with Fragile X Syndrome — Panel
Our panel discussion from the 2020 conference on adult issues in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Marcia Braden, Jayne Dixon Weber, Craig Erickson, and Randi Hagerman.
Medications for Fragile X: Anxiety, Irritable Behaviors & Aggression — Presentation
Drs. Berry-Kravis and Erickson discuss currently available supportive medications for treating anxiety and irritable, agitated, and aggressive behaviors in Fragile X syndrome.
Premutation Carrier Concerns — Panel
Panelists Randi Hagerman, Heather Hipp, Emily Allen, and Marsha Mailick helps answer what it means for your health, your family, and your future at the 17th International Fragile X Conference.
Fragile X-Associated Tremor/Ataxia Syndrome 101 — Presentation
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
Reproductive and Gynecologic Care for Women with the Fragile X Premutation — Presentation
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
NFXF regularly schedules webinars for the Fragile X community. In addition, we share presentations and panel recordings from our biennial NFXF International Fragile X Conferences. If there are topics you’d like to see more resources for, we’d love to hear from you.
Please note that these are also all available on our various Fragile X syndrome and premutation topic pages.
All Webinars: All recordings from our ongoing webinars series’ and NFXF International Fragile X Conference panels and presentations.
Conference Sessions: NFXF International Fragile X Conference panels and presentations only.