NFXF International Fragile X Conference

The NFXF International Fragile X Conference is the largest of its kind in the world. This biennial event brings professionals, caregivers, self-advocates, and family members together—a truly unique experience for a community all-too-familiar with the question: Fragile what? In addition to providing the opportunity for friendship and solidarity, sessions focus on strategies and techniques for living with Fragile X, as well as providing access to emerging research and opportunities.

The Biennial NFXF International Fragile X Conference

17th NFXF International Fragile X Conference Virtual Series
4 DAYS May 29–30, June 27, July 22, 2020 | 126 PRESENTERS | 650 HOUSEHOLDS FROM 24 COUNTRIES

As of Giving Tuesday, December 1, 2020, we have made 19 videos available to everyone. See below to view a list of all events within each of the three virtual series, or click the button to jump straight to the videos.

2020 FRAGILE X CONFERENCE VIDEOS

2020 Sessions, Panels & Presentations

Fragile X Syndrome Across the Lifespan

Presented by Fragile X experts, medical providers, caregivers, parents, and self-advocates on the topics of medications, education, and development and behavior for young children, adults, and females with Fragile X syndrome. Originally presented May 29–30, 2020.

In alphabetical order, all tracks: Adults, Development and Behavior, Education, Females, Medications, Young Children

Attitudes Toward Identity and Reproductive Decision Making in Women with Fragile X Syndrome
Reymundo Lozano

Awakening of Fragile X Awareness in Mexico
Mary Shelton

Candid Discussion About Sexual Development, Behaviors, and Support for Parents: Being at Ease With the Hard Conversations
Ioana Pal

Capacity Building for Inclusion in Camp & Recreation Programs
Jennifer Phillips

Charting the Journey: Building a Life Care Plan to Support Your Child’s Happiness and Your Peace of Mind
Mary Anne Ehlert

Collaborate With Us!! Learn how Sensory, Behavioral and Communicative Processes are Interwoven and Require a Team Approach
Laura Greiss Hess, Kerrie Chitwood, Melissa Mello

Development and Discussion of Self-Guided Parent-Implemented Interventions to Improve Outcomes of Youth with Fragile X Syndrome and Their Families
Lauren Bullard

Disability & Special Needs Planning Made Easy
Andre Sam

Early Childhood Developmental & Educational Guidelines for Children with Fragile X Syndrome
Jeanine Coleman, Karen Riley

Encouraging Communication Development in Fragile X Syndrome
Anne Hoffmann, Kristen Vincent

Fragile X Behavior Across Development: Prioritizing Treatment
Rebecca Shaffer

Hands-on Sensory and Somatic Self-Regulation for Managing Hyperarousal in Fragile X Syndrome
Tracy Murnan Stackhouse

Housing Family Group, Our Journey Creating Inclusive Housing Communities
Laurie Williams

KEYNOTE: Gregg Harper
Gregg L. Harper

KEYNOTE: Life as a Sibling of Someone with Fragile X Syndrome | WATCH
Sophia James

Managing Powerful Emotions for Young Children with FXS: Preschool Social & Emotional Skills Groups
Jeanine Coleman, Gloria Miller

Medication Management in ADHD
Carol Delahunty, Ave Lachiewicz

Medications for Fragile X: Anxiety, Irritable Behaviors, Aggression | WATCH
Elizabeth Berry-Kravis, Craig Erickson

My Journey to Driving with Fragile X Syndrome
Caroline Bridges

PANEL: Adult Issues | WATCH
Panelists: Elizabeth Berry-Kravis, Randi Hagerman, Craig Erickson, Marcia Braden, Jayne Dixon Weber
Moderator: Robert Miller

PANEL: Advocacy
Panelists/Moderators: Gregg L. Harper, Dan Whiting

PANEL: Clinical Trials in Fragile X Syndrome | WATCH
Panelists: Elizabeth Berry-Kravis, Craig Erickson, Randi Hagerman
Moderator: Jayne Dixon Weber

PANEL: Development & Behavior | WATCH
Panelists: Rebecca Shaffer, Barbara Haas-Givler, Kristin Burgess, Ruth Meissner, Tracy Murnan Stackhouse
Moderator: Robert Miller

PANEL: Education | WATCH
Panelists: Barbara Haas-Givler, Jeanine Coleman, Kerrie Chitwood, Karen Riley, Tracy Murnan Stackhouse
Moderators: Jayne Dixon Weber and Linda Sorensen

PANEL: Females with FXS
Panelists: Samantha Rhodes, Jodi Selinger, Cassie Stringer, Allison Cohen
Moderator: Marcia Braden

PANEL: Males with FXS
Panelists: Aaron Heisel, Doug Cooper, Joshua Rocker, Spencer Shelton, Michael Cohen
Moderator: Marcia Braden

PANEL: Medications | WATCH
Panelists: Elizabeth Berry-Kravis, Craig Erickson, Randi Hagerman
Moderator: Jayne Dixon Weber

PANEL: Young Children | WATCH
Panelists: Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, Tracy Murnan Stackhouse
Moderator: Linda Sorensen

Practical Strategies to Address Executive Function Deficits in School-Aged Girls with Fragile X Syndrome
Barbara Haas-Givler

Preparing for the Transition from Adolescence to Adulthood
Gail Spiridigliozzi, Ave Lachiewicz, Deby Burgess, Louise Morris, Jeffrey Morris

Seeing the Fragile X Light: How Collaboration Enhances Progress
Jessica Belokas, Tracy Murnan Stackhouse

Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills in School-Aged Children with FXS
Barbara Haas-Givler

Strategies to Enhance Play with Your Toddler or Preschooler
Jennifer Epstein

Targeted Medication Interventions in Fragile X Syndrome, From Basic Science to Clinical Trials
Sean McBride, Andrew Levitas

The ABC’s of Behavior — Scientific Strategies to Support Behavior Change
Liz Coan

The Fragile X Protein: What It Does and How Much is Enough | WATCH
Paul Hagerman

Toilet Training Across the Lifespan in FXS
Jennifer Epstein

Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? | WATCH
Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, Angela John Thurman

Trauma-Informed Care Applied in the Case of Fragile X Syndrome
Tracy Murnan Stackhouse, Meade McCue

Visual Wizardry: Using Visual Strategies to Support Daily Function
Ruth Meissner, Tracy Murnan Stackhouse

What Are These Behaviors? Changes That Happen in Adolescence
Rebecca Shaffer

What’s Next? Is Post-Secondary Education Right for You? What to Consider and How to Prepare
Kimberly Walther

You Really Are Never Too Old to Wear a Pink Tutu and Other Lessons Our Son Has Taught Our Family (2020 Update) | WATCH
Jayne Dixon Weber

Premutation Carrier Issues

Parent experiences, caring for yourself, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency. Originally presented June 27, 2020.

In alphabetical order, all tracks: Premutation Carrier Issues, Parent Experience, FXPOI, FXTAS

A Fragile X Journey: Lessons in Navigation
Kerry McCarthy Adams

CARRIERS: Finding BALANCE, Physically and Emotionally in the Grips of Fragile X
Frandi Mars

Fragile X & IVF: The Road We Traveled
Jennifer Barber

Fragile X Premutation Screening in the Male IVF Population
Lauren Yacobucci

Fragile X-Associated Tremor/Ataxia Syndrome 101 | WATCH
Deborah Hall, Maureen Leehey

International Premutation Research Registry: Getting Involved to Help Advance Our Understanding and Future Treatment of FXTAS and Other Premutation Issues | WATCH
David Hessl, Robert Miller

IVF? PGD? My Personal Journey as a Premutation Carrier — Navigating the Different Paths to Having a Biological Family — Was Confusing, Discouraging, Joyful and More
Keiko Mathewson

KEYNOTE: CGG Repeats as Drivers of Disease and Targets for Therapy in Fragile X-Associated Disorders | WATCH
Peter Todd

KEYNOTE: Health Concerns for Women Premutation Carriers: FXPOI and Beyond
Emily Allen

Panel: Fragile X-Associated Tremor/Ataxia Syndrome: Advancing Our Understanding and Future Treatment of FXTAS | WATCH
Panelists: Deborah Hall, Maureen Leehey, Peter Todd, Nancy Hertzig
Moderator: Robert Miller

Panel: Premutation Carrier Concerns
Panelists: Randi Hagerman, Heather Hipp, Emily Allen, Marsha Mailick

Pilates for Caregivers! Reduce Stress! Breathe! Improve Your Posture! Stretch and Strengthen! Relax! Focus!
Heather Crosby

Premutation Carriers — The Latest
Randi Hagerman

Reproductive and Gynecologic Care for Women with the Fragile X Premutation | WATCH
Panelists: Heather Hipp, Jennifer Barber, Keiko Mathewson
Moderator: Jayne Dixon Weber

Self Care for Mothers of Children With Fragile X Syndrome
Christine Escobar-Sawicki

Surviving and Thriving! the Day to Day with Fragile X
Kara Frech

Two Xtraordinary Brothers
Nancy Hertzig, Nick Hertzig

Using Mindfulness and Acceptance Techniques to Reduce Stress and Improve Coping
Anne Wheeler

Women with Fragile X-Associated Tremor/Ataxia Syndrome — An Update on Clinical Criteria
Andrea Schneider

Fragile X Research Roundup

Top researchers on the hottest research topics in Fragile X, including recently completed and ongoing studies. Originally presented July 22, 2020.

In alphabetical order

A Comparison of the Expressed Emotion of Parents of Children With FXS and Parents of Children With Different Causes of Intellectual Disability
Jeanine Coleman

A Qualitative Analysis of Parent Reported Behavior Problems for Children with Intellectual and Developmental Disabilities: A Comparison of Fragile X Syndrome, Down Syndrome, and Autism Spectrum Disorder
Talia Thompson

Adeno-Associated Virus (AAV) Mediated Approach to Durably Restore FMRP in Mouse Brain
Lindsay Beasley

Age-Related Decline in Cognitive-Linguistic Skills in Carriers of the FMR1 Premutation: Syntactic Complexity Declines Across Midlife in Women with Family Histories of FXTAS
Jessica Klusek

All Three Mammalian MutL Complexes are Required for Repeat Expansion in a Cell Model of the Fragile X-Related Disorders
Carson Miller

Asuragen: Fragile X Molecular Testing: What, When, Why & How
Gary Latham

Auditory Hypersensitivity and Cognitive Performance in FMR1 Premutation Carriers
Jordan Norris

Baseline Toolbox Data from a Multicenter Double-Blind, Placebo-Controlled Trial of Metformin in Individuals with Fragile X Syndrome
Hazel Maridith B. Biag

Behavioral Rigidity in Fragile X Syndrome: Using EEG to Provide Novel Insights Into Its Neural Underpinnings
Lauren Schmitt

Biomarkers Predictive of Metformin Treatment in Fragile X Syndrome
Flora Tassone

Brain Activation During a Social Interaction Task in Girls with Fragile X Syndrome
Matthew Marzelli

Cardiovascular Problems in the Fragile X Premutation: Case Series and Review
Nattaporn Tassanakijpanich

Cattell-Horn Carroll Theory-Based Cognitive Profile of Children with Fragile X Syndrome Using the Woodcock Johnson, Fourth Edition
Christina Aguirre-Kolb

Cerebellar-Cortical Function and Connectivity During Sensorimotor Behavior in Aging FMR1 Gene Premutation Carriers
Walker McKinneys

Child Challenging Behavior Influences Maternal Mental Health and Relationship Quality Over Time in Fragile X Syndrome
Heather Fielding-Gebhardt

Cognitive and Adaptive Behavior Profiles in Fragile X Syndrome: Baseline Cohort in a Multi-Site Natural History Study
Lisa Cordeiro

Complexity and Coherence Across Language Contexts in Females with Fragile X Syndrome
Hannah Barton

Coupled Transcriptional and Translational Reactivation of the Fragile X Locus
Bryana Bayly

Delineating Repetitive Behavior Profiles Across the Lifespan in Fragile X Syndrome: Results from the FORWARD Project
Debra Reisinger

Development of a Large Mammalian Model of Fragile X Syndrome
Victoria Hawkins

Development of Neural Response to Novel Sounds in Fragile X Syndrome: Potential Biomarkers
Elizabeth Berry-Kravis

Differences in Temporal Parietal Junction Activation Between Fragile X Premutation Carriers Who Do and Do Not Convert to Having Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Diego Placido

Double-Blind, Placebo-Controlled, Single-Dose Study of Minocycline and Lovastatin in Adults with Fragile X Syndrome
Craig Erickson

Drug Treatment of Irritability, Aggression, Agitation and Self-Injurious Behavior in Fragile X Syndrome
Craig Erickson

Empathy and Anxiety in Young Girls with Fragile X Syndrome
Jonas Miller

Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome: Results from the FORWARD Project
Craig Erickson

Examining Maintenance of Skills Gained in a Parent-Implemented Spoken Language Intervention for Fragile X Syndrome
Amy Banasik

Exploring 5-HT2 Receptors as Targets for Treating Epilepsy in Fragile X Syndrome: A Preclinical Study of FMR1 Knock-Out Mice
Tanishka Saraf

Exploring Anxiety in Girls with Fragile X Syndrome
Amy Lightbody

Factor Structure of the Aberrant Behavior Checklist in Individuals with FXS: Clarifications and Future Guidance
Howard Andrews

Factors Associated with CGG Repeat Instability and Mosaicism in Female FMR1 Premutation Carriers
Yehyun Hwang

Feasibility and Validity of Standardized Language Assessment in Fragile X Syndrome
Anne Hoffmann

Feasibility of Dual-Task Treadmill Training to Improve Gait and Balance in Patients with FXTAS: A Pilot Trial
Deborah Bang

Feasibility of Utilizing Functional Near-Infrared Spectroscopy (FNIRS) as an Imaging Tool in Young Children with Fragile X Syndrome (FXS)
Victoria Rosen

Increasing Access to Services for Families of Infants with Fragile X: Utilizing Telehealth for Genetic Counseling, Assessment, and Intervention | WATCH
Anne Wheeler, Beth Boyea, and Katherine C. Okoniewski

Keynote: Basic Science Research Update: From FMRP Biology and FXS Disease Mechanisms to Rationale for Therapeutic Strategies | WATCH
Gary Bassell

Online conference call with individual attendees

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The 18th NFXF International Fragile X Conference is July 14–17, 2022 in San Diego.

   2020 SESSION VIDEOS

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   MEET OUR 2020 SPONSORS

Thank you to all our sponsors!

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Conference FAQs

The 18th NFXF International Fragile X Conference is July 14–17, 2022 in San Diego.