Conference Agenda

Hope starts the engine and intervention powers the outcome:

Why evidence based intervention is essential to assure fidelity in treatment

Marcia Braden, PhDis a licensed psychologist with a clinical practice specializing in children and adolescents. She is a former teacher with experience teaching general and special education. She has written and published numerous articles related to education and behavior management strategies, techniques, and interventions. She is a contributing author to the book Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman and Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber. She is the author of Fragile – Handle With Care: More About Fragile X Syndrome.

Dr. Braden is a member of the Scientific and Clinical Advisory Board to the National Fragile X Foundation and is a member of the Advisory Committee for the HillSprings Learning Center.

Dr. Braden frequently consults with parents, therapists, educators, and medical staff about effective treatments. Respected for her work internationally, she has presented at numerous conferences and workshops about fragile X syndrome, autism, and other related disorders.

9:00 AM – 9:30 AM

The 70-year Journey of Fragile X Syndrome

Stephen Warren, PhDis the William Patterson Timmie Professor and Charles Howard Candler Chair of Human Genetics as well as Professor of Biochemistry and of Pediatrics at Emory University School of Medicine. Dr. Warren received his PhD in Human Genetics from Michigan State University and was a fellow at the University of Illinois College of Medicine. He is a Diplomat of the American Board of Medical Genetics and a founding Fellow of the American College of Medical Genetics. Dr. Warren is the past President of the American Society of Human Genetics and former Editor-in-Chief of The American Journal of Human Genetics. In 1991 he led the international team that discovered the FMR1 gene, responsible for fragile X syndrome. Since that time, his lab has consistently played an important role in deciphering the genetics, biochemistry, cell biology and neurobiology of fragile X syndrome. Dr. Warren’s work has illuminated therapeutic approaches for the treatment of fragile X syndrome, including successful chemical library screens for potential therapeutics. He is a member of the Institute of Medicine and the National Academy of Sciences.

Early Morning Break

Understanding and Treating Behavioral Issues

Marcia Braden, PhD, Karen Riley, PhD

Is your child subject to seclusion or restraint in school due to behavior? Learn about New Federal Guidelines

Jeffrey Cohen, JD

Hyperarousal in Fragile X Syndrome: Teenage and Adult Issues

Richard Belser, PhD, Vicki Sudhalter, PhD

Designing Effective Sensory Diets for Children and Adults with FXS

Jamie McGrew, MS, OTR/L, Tracy Murnan Stackhouse, MA, OTR/L, Sarah K. Scharfenaker, MA, CCC-SLP

Anxiety and Hyperarousal in Fragile X Syndrome

Lisa Cordeiro, MS

Diagnostic Alphabet Soup: Understanding How Fragile X Fits in With Educational and Behavioral Diagnoses

Brenda Finucane, MS, CGC

Evaluating Children with Fragile X Syndrome for Educational Planning and Research: How Is It Done and What Does it all Mean?

Gail A. Spiridigliozzi, PhD

Spontaneous Facial Emotion Discrimination in Individuals with Autism Spectrum Disorders and Fragile X Syndrome

Hayley Rhiannon Mace

Effect of Minocycline on Attention and Social Gaze Processing in Children with Fragile X Syndrome

Stephanie Sansone

A Comparison of Word Learning Assessed with Eye Tracking to Standardized Language Scores

David P. Benjamin

Update on Treatment for FXTAS

Deborah Hall, MD, PhD

Addressing Caregiving Needs for a Loved One with FXTAS

Louise W. Gane, MS

Formation of an RNA/DNA Hybrid R-loop at the FMR1 5′UTR: A New Piece of the FMR1 Molecular Puzzle

Erick Loomis (A Conquer Fragile X Young Investigator)

The Role of Cockayne Syndrome Group B (CSB) in Repeat Expansion in Fragile X Premutation Mice

Xiaonan Zhao, PhD, Karen Usdin, PhD

Sequencing the Unsequenceable: Expanded CGG Repeats in the Human FMR1 Gene

Paul J. Hagerman, MD, PhD

Late Morning Break

Psychopharmacology (Medication Treatment) for Behavior in Fragile X Syndrome

Elizabeth M. Berry-Kravis, MD, PhD, Ave Lachiewicz, MD

From Wonder Years to Golden Years: Making the Transition to Adult Services

Brenda Finucane, MS, CGC, Jayne Dixon Weber

A Home of One’s Own: Meeting the Challenges of Independent Living

Anita Abraham-Inz, MS

Personal & Professional Experiences: Reproductive Options for FMR1 Carriers

Amy Cronister, MS, CGC, Vanessa Chartouni, Michele Kaplan

Brain Development in Fragile X Syndrome from Infancy Through Adolescence: Relevance to Learning and Behavior

Allan L. Reiss, MD

Differences in Cortical Hyperexcitability in Fragile X Syndrome

Andrea Schneider, PhD

Cognitive and Behavioral Correlates of Caudate Subregion Shape in Fragile X Syndrome

Daniel Peng

Brain Development in Fragile X Syndrome from Infancy Through Adolescence: Relevance to Learning and Behavior

Allan L. Reiss, MD

Differences in Cortical Hyperexcitability in Fragile X Syndrome

Andrea Schneider, PhD

Repeated Assessment of Neuromotor Skills: Effect on Outcome Measures and Implications for Intervention Studies in Fragile X Syndrome

Lisa Cordeiro, MS

Neuromotor Outcome Measures for Clinical Trials in FXS:  Strategies and Supports for Success

Jamie McGrew, MS, OTR/L

Profile of Neuromotor Skills in Fragile X Syndrome

Nicole Tartaglia, MD, Tracy Murnan Stackhouse, MA, OTR/L

Neuromotor Outcome Measures For Clinical Trials in Fragile X Syndrome

Nicole Tartaglia, MD, Tracy Murnan Stackhouse, MA, OTR/L

Ovarian Abnormalities in a Fragile X Premutation Mouse Model

Karen Usdin, PhD

Longitudinal Brain Volume and Shape Changes in the CGG KI Mouse Model of the Fragile X Premutation and FXTAS

Qiang Wang, PhD

Toward the Development of a Behavioral Endophenotype of the CGG KI Mouse Model of the Fragile X Premutation

Michael Ryan Hunsaker, PhD, Robert F. Berman, PhD

Reduced Activity Dependent Increases in Fmrp and Arc Proteins in the Motor Cortex of CGG KI Mice after Training in a Skilled Forelimb Reaching Task

Ramona E. Von Leden, Lindsey C Curley, Michael Ryan Hunsaker, PhD, Robert F. Berman, PhD

TBD

Award Luncheon

Hosted by the NFXF to recognize those who have a significant impact in the Fragile X community.

Everyone Needs to Play: Promoting Play Across the Lifespan

Tracy Murnan Stackhouse, MA, OTR/L, Sarah K. Scharfenaker, MA, CCC-SLP

Practical Ideas for Play for your Child with Fragile X Syndrome

Dawn Rohlik, OTR/L

Genetic Counseling: Not a One Time Event

Allyn McConkie-Rosell, PhD, Brenda Finucane, MS, CGC, Liane Abrams, MS, CGC, Amy Cronister, MS, CGC

Genetic Counseling: The Importance of Facilitating Family Communication

Allyn McConkie-Rosell, PhD

Tough Cases:  A Case for Prescriptive Intervention Using Best Practice

Marcia Braden, PhD, Anne Marie Gjestson, MS

Fragile X, Intermediate, and Premutation Alleles in the Autism Genetic Resource Exchange (AGRE)

W. Ted Brown, MD, PhD

Fragile X Syndrome in British Columbia: Past, Present, Future

Gudrun Aubertin, MD

Population Carrier Screening for Fragile X Syndrome – Attitudes and Experiences of Women Undergoing Screening

Jonathan Cohen, MD

Motor Stereotypies in Fragile X Syndrome

Victor Kaytser, Deborah Hall, MD, PhD, Elizabeth Berry-Kravis, MD, PhD

Expressive Language Sampling as an Outcome Measure for Interventions in Fragile X Syndrome

Elizabeth Berry-Kravis, MD, PhD

Feasibility, Reproducibility, and Clinical Validity of the Pediatric Anxiety Rating Scale, Revised (PARS-R) in Fragile X Syndrome

Nicole M. Russo-Ponsaran, PhD (A Conquer Fragile X Young Investigator) , Elizabeth M. Berry-Kravis, MD, PhD

Development of a Markerless Motion Analysis System to Quantify Hyperkinesis and Stereotypies in Males with Fragile X Syndrome

Joan Ann O’Keefe, PT, PhD (A Conquer Fragile X Young Investigator)

International Fragile X Clinics and Parent Support Group Meeting

Robert Miller

Bidirectional Transcription and CTCF Binding at the Human FMR1 Locus: Implications for the Fragile X-Associated Disorders

Galina N. Filippova, PhD

Targets of FMR4 – A Functional Non-coding RNA at the FMR1 Locus

Veronica Peschansky

Mechanisms of CGG-Repeat Mediated Changes in the FMR1 Expression

Daman Kumari, PhD

TBD

Afternoon Break

Hyperarousal in Fragile X Syndrome: Transitions, IEPs and Childhood Issues

Vicki Sudhalter, PhD, Richard Belser, PhD

Advances in our Understanding of Basic Disease Mechanisms, Clinical Involvement and Treatment of Premutation Carriers

Randi Hagerman, MD, Paul Hagerman, MD, PhD

Building Fragile X Awareness in Your Community

Theodore G. Coutilish, MA, Holly Usrey-Roos

How to Increase Advocacy Efforts in Your State

Tammy Selinger, Andy Selinger

Finding the Adult Services in Your State

Karen Riley, PhD, Jayne Dixon Weber

Females with FXS

Ali Cohen, Anna Cohen, Chelsea Heisel, Lara Bailey, Bethany Collins

Prevalence of Fragile X Gene Expansions in Alzheimer Disease and Memory Disorders

Deborah Hall, MD, PhD

Characterization of Balance Deficits in FMR1 Premutation Carriers With and Without FXTAS Reveals a Unique Profile of Impaired Vestibular Control and Postural Instability.

Joan Ann O’Keefe, PT, PhD (A Conquer Fragile X Young Investigator)

Dystonia in FMR1 Premutation Carriers

Deborah Hall, MD, PhD

Symposia: Visual and Early Development of Infants and Toddlers with Fragile X Syndrome

Co-chairs: Susan M. Rivera, Ph.D. and Jane E. Roberts, Ph.D.

Attention Shifting in Infants with Fragile X Syndrome; Investigating the Brain’s Orienting Network

Emily R. Owen, MA, RN

Five Years of Studying the Visual and Early Cognitive Development of Infants and Toddlers with Fragile X Syndrome: What Have We Learned?

Susan M. Rivera, PhD

Developmental Trajectories in Infants with Fragile X Syndrome: Comparing Fragile X, Autism Siblings, and Typical Controls

Lindsay McCary, PhD, Svetlana V. Shinkareva, PhD, Jane Roberts, PhD

Visual Attention in Infants at High Risk for Autism: Comparing Fragile X to Autism Siblings

Bridgette Tonnsen, MA, Jane E. Roberts, PhD

Miami Marlins vs. San Diego Padres

Transportation is included and it’s a 10 minute bus ride.

• Bus Loading begins at 5:30 p.m. Hyatt Lobby Entrance
• Bus Loading begins at 5:45 p.m. Intercontinental Lobby Entrance

Join us in our own section just off the 3rd base line for the Marlins game. With our own section this will allow everyone to talk, move around and socialize. Included is a voucher for the concession stands for use on souvenirs or food.