The 18th NFXF International Fragile X Conference
July 14–17, 2022 | Town & Country San Diego
This is the archive page for the 2022 18th NFXF International Fragile X Conference.
Learn more about the next NFXF International Fragile X Conference.
Speakers & Speaking Sessions
Check out the sessions, keynotes, industry updates, breakout sessions, and panel and poster presentations, listed by speaker.
Note: All bio information is as of the date of the conference.
Leonard Abbeduto, PhD
Professor & Director, UC Davis MIND Institute
- Transitioning to Independence in Adulthood: What Helps? What Hurts?
- Self-Advocate Session: Transitioning to Independence in Adulthood: What helps? What Hurts?
Emily Allen, PhD
Assistant Professor, Emory University
- Health concerns for women who carry an FMR1 premutation
- (13) The Diagnostic Experience of Women with Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)
- Panel Discussion — Fragile X Premutation
Jennifer Barber
Project Coordinator, National Fragile X Foundation
- Panel Discussion — Females with Fragile X Syndrome
Elizabeth Berry-Kravis, MD, PhD
Professor, Rush University Medical Center
- Keynote — Clinical Trials in Fragile X Syndrome
- Panel Discussion — Clinical Trials in Fragile X Syndrome Questions & Answers
- Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome
- Panel Discussion — Research Landscape
- (44) Benefit of BPN14770 for Cognition, Language and Daily Function in Adults with Fragile X Syndrome: A Randomized, Placebo-Controlled, Phase 2 Clinical Trial
- (45) FXLEARN Trial: Effects of AFQ056 on Language Learning in Fragile X Syndrome
- Medication for Fragile X: Anxiety, Irritable Behaviors, Aggression
- Seizures in Fragile X Syndrome: Associations and Longitudinal Analysis of a Large Clinic-Based Cohort
- The Association Between Mosaicism Type and Cognitive and Behavioral Functioning Among Males with Fragile X Syndrome
- Panel Discussion — Behavior
- Panel Discussion — Medications
Laurie Bridges
NFXF Houston Chapter Leader, NFXF Board Member, National Fragile X Foundation
- Panel Discussion — Research Landscape
- Panel Discussion — Females with Fragile X Syndrome
Will Bridges
Unicat Catalyst Technologies – Sales Director (Americas), FX Dad from Houston, Texas
- Dads Helping Dads
Jeanine Coleman
Associate Professor, Regis University
- (14) Managing Powerful Emotions for Young Children with FXS: Integrated Preschool Social & Emotional Skills Groups
- Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome
- Panel Discussion — Education Question & Answers
Kerrie Lemons Chitwood, PhD, CCC-SLP
Assistant Professor, CSU Monterey Bay
- Assistive Technology: Tackling the Trends and the Tried & True
- No Tears or Fears in the School Age Years: Make the Most of Your Team’s Collaboration
Carol Delahunty, MD
Developmental and Behavioral Pediatrics, MetroHealth
- Improving Sleep in Children and Youth with Fragile X Syndrome
Kelley Dunphy
NFXF Sibling and Self-Advocate Network (SSAN)
- Sibling & Self-Advocate Welcome Session
- Panel Discussion — Sibling Perspective
Craig Erickson, MD
Professor, Cincinnati Children’s Hospital Medical Center
- Keynote — Clinical Trials in Fragile X Syndrome
- Panel Discussion — Clinical Trials in Fragile X Syndrome Questions & Answers
- Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome
- Panel Discussion — Research Landscape
- Fragile X Protein Level as a Mediator of Treatment Response in Early Phase Target Engagement Drug Studies
- (41) Pilot Study of BAER-101, a selective GABA A alpha 2,3 agonist in adults with fragile X syndrome
- (42) Single Dose Racemic Baclofen EEG-Focused Target Engagement Across Species in Fragile X Syndrome
- Medication for Fragile X: Anxiety, Irritable Behaviors, Aggression
- The Effect of Medications on Longitudinal Behavior and Symptoms in Fragile X Syndrome
- Panel Discussion — Behavior
- Panel Discussion — Medications
Matthew Fasciano
- Panel Discussion — Self Advocate
Jason Fishman
Fragile X Resource Center of Missouri
- Panel Discussion — Self Advocate
April Forehand
- Panel Discussion — Self Advocate
Luke Alan Forehand
- Panel Discussion — Self Advocate
Kara Frech
Board Member, NFXF Board
- Panel Discussion — Research Landscape
Abigail Gaunt
Assistant Dean of Students, Tulane Law School
- Panel Discussion — Sibling Perspective
Dinah Godwin
Director of Social Work, Meyer Center for Developmental Pediatrics and Autism, Texas Children’s Hospital/Baylor College of Medicine
- Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome
Barbara Haas-Givler, MEd, BCBA
Director, Education and Behavioral Outreach, Geisinger Fragile X Clinic
- Strategies to Improve Executive Functioning Skills for School-Aged Females with Fragile X
- Panel Discussion — Females with Fragile X Syndrome
- Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills
Randi J. Hagerman, MD
Medical Director Fragile X Research and Treatment Center, UC Davis MIND Institute
- Keynote — Clinical Trials in Fragile X Syndrome
- Panel Discussion — Clinical Trials in Fragile X Syndrome Questions & Answers
- Panel Discussion — Research Landscape
- Panel Discussion — Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS)
- Premutation Concerns
- Panel Discussion — Fragile X Premutation
- Panel Discussion — Behavior
- Panel Discussion — Medications
Deborah Hall
BLAAC PD Site PI, RUSH University
- Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome
- Panel Discussion — Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS)
- Fragile X Gray Zone Alleles Are Associated With Signs of Parkinsonism and Earlier Death
- Panel Discussion — Fragile X Premutation
Holly Harris
Texas Childrens Hospital
- Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome
Laura Greiss Hess, PhD, OTR/L
Associate Professor, PhD, OTR/L, Dominican University of California
- Assistive Technology: Tackling the Trends and the Tried & True
- No Tears or Fears in the School Age Years: Make the Most of Your Team’s Collaboration
David Hessl PhD
Professor, MIND Institute UC Davis
- Panel Discussion — Research Landscape
- Panel Discussion — Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS)
- (72) The International Fragile X Premutation Registry: Building a Resource For Research and Clinical Trial Readiness
- Observable Signs of Anxiety in Individuals with Fragile X Syndrome: Caregiver and Self-Advocate Perspectives
- Panel Discussion — Fragile X Premutation
Anne Hoffmann
Assistant Professor & Speech-Language Pathologist, Rush University Medical Center
- Encouraging Early Communication
- No Tears or Fears in the School Age Years: Make the Most of Your Team’s Collaboration
- (37) Analysis of a Repetitive Language Coding System: Comparisons between Fragile X Syndrome, Down Syndrome, and Autism
- Panel Discussion — Education Question & Answers
Susan Howell, MS, CGC, MBA
Certified Genetic Counselor, Children’s Hospital Colorado
- (22.5) Primary Care in the World of Fragile X
- Panel Discussion — Females with Fragile X Syndrome
Dillon Kelley
Co-Leader, Sibling and Self-Advocate Network
- Sibling & Self-Advocate Welcome Session
Tracy King, MD, MPH
Medical Officer, NIH/NICHD
- Panel Discussion — Research Landscape
Jessica Klusek, PhD CCC-SLP
Associate Professor, University of South Carolina
- Anxiety, But Not Depression, Predicts a Longitudinal Increase in Functional Tremor Symptoms in Women with the FMR1 Premutation During Midlife
- Transitioning to Independence in Adulthood: What Helps? What Hurts?
- Self-Advocate Session: Transitioning to Independence in Adulthood: What helps? What Hurts?
Reymundo Lozano, MD, MS
Assistant Professor, Mount Sinai
- (61) Parent and Caregiver Perspectives Towards Cannabidiol as a Treatment for Fragile X Syndrome
- (62) Exploring parents’ concerns regarding long-term support/living arrangements for their children with FXS
- Panel Discussion — Medications
Emily Mack
Board President, National Fragile X Foundation
- Panel Discussion — Research Landscape
Jean Luan McColl
Emory University
- Panel Discussion — Research Landscape
Bonnie McKinnon, MMSc
Genetic Counselor, Northside Hospital in Atlanta, Georgia
- The Diagnostic Experience of Women with Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)
Robert Miller
National Fragile X Foundation
- Panel Discussion — Self Advocate
Amie Milunovich
FORWARD National Coordinator, National Fragile X Foundation
- Panel Discussion — Research Landscape
- Introduction to FORWARD
- Recent Findings from the FORWARD Project — Part 2
Karen Regan
Professional Research Assistant, Children’s Hospital Colorado
- Starting and Monitoring Medications in Fragile X
Debra Reisinger, PhD
Assistant Professor of Clinical Pediatrics, Indiana University School of Medicine
- Common Behaviors and Available Treatments Across the Lifespan
Jessica Rogers
Texas Fragile X Association
- Panel Discussion — Self Advocate
Hilary Rosselot
Executive Director, Research Facilitation Lead, National Fragile X Foundation
- Panel Discussion — Clinical Trials in Fragile X Syndrome Questions & Answers
- Panel Discussion — Research Landscape
- Keynote — Industry Updates
- Panel Discussion — Fragile X Premutation
- Panel Discussion — Medications
Lauren Schmitt, PhD
Assistant Professor, Cincinnati Children’s Hospital Medical Center
- Clinical Utility of Optimized Fragile X Protein Assay
- (54) Lessons from Taking a Second Look: Clinical Trial of Acamprosate in FXS
- How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in Fragile X Syndrome — What It Looks Like and How to Deal with It
- Panel Discussion — Behavior
Rebecca Shaffer
Director of Psychological Services at Cincinnati Fragile X Treatment and Research Center, Cincinnati Children’s Hospital Medical Center
- Emotion Dysregulation in Fragile X Syndrome
- Stay Calm and Regulate!
- Panel Discussion — Females with Fragile X Syndrome
Hailey Silver, MA
Clinical Psychology MA Graduate, Teachers College Columbia University
- (51) The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X
- Panel Discussion — Sibling Perspective
Josee Slama
South Dakota State University
- Panel Discussion — Sibling Perspective
Linda Sorensen
Conference Director, former Executive Director, National Fragile X Foundation
- Panel Discussion — Education Question & Answers
- Panel Discussion — Behavior
Diane Southard
Parent
- Sibling & Self-Advocate Welcome Session
Tracy Murnan Stackhouse
Executive Director, Co-founder and Occupational Therapist, Developmental FX
- Hands-On Sensory & Body-Based Self-Regulation for Managing Hyperarousal & Anxiety in FXS
- (20) Achieving a Transdisciplinary Strengths-Based Approach to Learning and Living
- Using Visuals to Support Daily Function
- Panel Discussion — Education Question & Answers
- Movement & Relaxation
- Panel Discussion — Behavior
Tess Swayne
- Panel Discussion — Self Advocate
Nicole Tartaglia
Associate Professor of Pediatrics, Developmental-Behavioral Pediatrician, University of Colorado School of Medicine, Children’s Hospital Colorado
- Starting and Monitoring Medications in Fragile X
- (18) Moms with a Full Mutation
- Keynote — A Day in the Life of a Fragile X Doctor
- Panel Discussion — Females with Fragile X Syndrome
- Medical Problems in Fragile X Syndrome: FORWARD Results From Over 1,400 Participants Age 0-21 with the Fragile X Full Mutation
- Cognitive and Adaptive Functioning Profiles of Individuals with FXS Across the Lifespan
- Panel Discussion — Medications
Julie Taylor
Associate Professor, Vanderbilt University Medical Center
- Transitioning to Independence in Adulthood: What Helps? What Hurts?
Angie Thurman
UC Davis, MIND Institute
- Transitioning to Independence in Adulthood: What Helps? What Hurts?
- Self-Advocate Session: Transitioning to Independence in Adulthood: What Helps? What Hurts?
Peter Todd
U Michigan
- Panel Discussion — Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS)
- Start With the End in Mind: Translational Frameshifting and Ribosomal Quality Control in CGG Repeat–Associated Neurotoxicity
Peyton Toman
University of Tampa
- Sibling and Self-Advocate Dance Practice
- Sibling & Self Advocate Dance Session — Part 2
Angel Wang
Clinic Coordinator, Rush University
- Panel Discussion — Research Landscape
Missy Zolecki
Director, Community Empowerment, National Fragile X Foundation
- Panel Discussion — Research Landscape
- Medication for Fragile X: Anxiety, Irritable Behaviors, Aggression
Paige Zolecki
University of Florida
- Sibling and Self-Advocate Dance Practice
- Sibling & Self Advocate Dance Session — Part 2
- Panel Discussion — Sibling Perspective
202O CONFERENCE VIDEOS
Our 2020 conference was our first virtual conference due to COVID-19. It was a difficult time as we all know, but it turned out to be one of our most successful conferences ever. As always, the top experts in the field of Fragile X delivered all the latest news and research.
Click the button below to get on-demand access to 19 of the 2020 conference sessions from our 2022 conference in 2020. Or, check out the 2020 itinerary to get a look at the depth and breadth of our conferences.
MAY 29–30, JUNE 27, JULY 22, 2020 | VIRTUAL
Our 2020 conference was our first virtual conference due to COVID-19. It was a difficult time as we all know, but it turned out to be one of our most successful conferences ever. As always, the top experts in the field of Fragile X delivered all the latest news and research.
Click the button below to get on-demand access to 19 of the 2020 conference sessions from our last conference in 2020. Or, check out the 2020 itinerary to get a look at the depth and breadth of our conferences.
