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.

17th NFXF International Fragile X Conference Virtual Series

137 ON-DEMAND VIDEO SESSIONS
4 DAYS | 126 PRESENTERS | 650 HOUSEHOLDS FROM 24 COUNTRIES

Register now for exclusive access to 137 on-demand videos — including all 41 live sessions + 85 pre-recorded sessions + 11 panels — from all three events (May 29–30, June 27, July 22). Get all this, plus presenter resources, through to the end of 2020.

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What’s Included

When you register for on-demand access to the 17th NFXF International Fragile X Conference Virtual Series you have 24/7 on-demand access to all of our recorded and previously live keynote, panel, workshop, and speaker-led sessions from all three conference events, through to the end of 2020.

Fragile X Syndrome Across the Lifespan

45 ON-DEMAND VIDEOS from 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

Clinical Trials in Fragile X Syndrome
Elizabeth Berry-Kravis, Craig Erickson, Randi Hagerman

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
Elizabeth Berry-Kravis, Craig Erickson

My Journey to Driving with Fragile X Syndrome
Caroline Bridges

PANEL: Adults with FXS
Elizabeth Berry-Kravis, Randi Hagerman, Craig Erickson, Marcia Braden, Jayne Dixon Weber

PANEL: Advocacy
Gregg L. Harper, Dan Whiting

PANEL: Development & Behavior
Rebecca Shaffer, Barbara Haas-Givler, Kristin Burgess, Ruth Meissner, Tracy Murnan Stackhouse

PANEL: Education
Barbara Haas-Givler, Jeanine Coleman, Kerrie Chitwood, Karen Riley, Tracy Murnan Stackhouse

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

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

PANEL: Medications
Elizabeth Berry-Kravis, Craig Erickson, Randi Hagerman

PANEL: Young Children
Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, Tracy Murnan Stackhouse

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
Paul Hagerman

Toilet Training Across the Lifespan in FXS
Jennifer Epstein

Transitioning to Independence in Adulthood: What Helps? What Are the Barriers?
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)
Jayne Dixon Weber

Premutation Carrier Issues

20 ON-DEMAND VIDEOS including 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

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

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
Deborah Hall, Maureen Leehey

FXTAS & the Family
Nancy Hertzig

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
Peter Todd

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

Panel: Fragile X-Associated Tremor/Ataxia Syndrome
Deborah Hall, Maureen Leehey, Peter Todd, Nancy Hertzig

Panel: Premutation Carrier Concerns
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
Heather Hipp, Jennifer Barber, Keiko Mathewson

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

67 ON-DEMAND VIDEOS from 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

Clinical Trials in Fragile X Syndrome
Elizabeth Berry-Kravis, Craig Erickson, Randi Hagerman

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

Registration

PRICING BASED ON YOUR SITUATION

The financial impacts of the global health crisis are varied and widespread. That’s why we’re offering you the ability to choose your price for this valuable educational series.

All levels of registration provide access to:

  • EVERY presentation on-demand — 48 hours of content.
  • Plus all supporting materials supplied by presenters.

CHAMPION $349

If you are able to help others in the Fragile X community, please consider being an educational champion. This option will cover the basic costs of delivering these learning opportunities to you, provide support to those who need it, as well as help ensure that the NFXF is here to deliver future educational opportunities to the community.  

SUSTAIN $249

If you are sustaining yourself during this very difficult time, please consider this option to pay for the basic costs of delivering these learning opportunities to you.

SUPPORT $179

If your finances have been significantly impacted during this unprecedented time, feel free to select this option. We’re here to support you!

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DONATE TO SUPPORT EDUCATION
Online conference call with individual attendees

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No matter when you register, you get on-demand access to all sessions throughout 2020.

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   MEET OUR 2020 SPONSORS

Thank you to all our sponsors!

Zynerba Pharmaceuticals conference sponsor logo display
Tetra Therapeutics 17th NFXF International Fragile X Conference sponsor logo
Ovid Therapeutics, Bold Medicine, 17th NFXF International Fragile X Conference sponsor logo
Asuragen 17th NFXF International Fragile X Conference sponsor logo

Conference FAQs

Everyone! We have family-friendly sessions that will educate parents, caregivers, teachers, researchers, medical providers, and self-advocates. All are welcome to all sessions.

On-demand means you can view the presentation whenever it is most convenient for you.

On-demand sessions are placed in a time slot on the agenda due to the software, but they can be watched at any time after the start of each event and are available through 2020 exclusively for registered attendees.

Live sessions will be recorded and available as on-demand approximately one week after each of the three live events.

The recordings and handouts will be available to registered attendees through 2020.

We are using an application called Whova, and you’ll be able to view the conference — including agendas, speaker bios, bonus materials, and on-demand videos — on a laptop or desktop computer web browser, or on a smartphone or tablet using the Whova mobile app.

Registered attendees will receive access information approximately one week prior to the May 29 opening day so you can get oriented before the event begins, or you can download the mobile app now (full access and live events for the first series begin May 29).

We’ll be adding more information about using the app as we get closer to May 29.

YES!! You can register at any time in 2020 and will have access to all sessions, live and on-demand. The content is available throughout 2020.

You may share registration access within a household (on one device at a time) 

Please note that your registration fees permit shared access within the same household to the conference events on one device at a time – phone, tablet, laptop, desktop, or Smart TV. Sharing your access with unregistered users will result in the cancellation of your own registration fee without a refund. 

You can send us an email using the button below, or call us at (800) 688-8765 (9–5 M–F Eastern).

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