Conference Agenda

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8:30 AM – 9:30 AM in Grand Ballroom

Keynote Addresses

Presentations:

8:30 AM – 9:00 AM

The Story Behind the mGluR5 Theory of Fragile X: How Basic Research Led to Clinical Trials

Kimberly M. Huber, PhDearned a PhD in Neurobiology from the University of Texas Graduate School of Biomedical Sciences and completed her postdoctoral training with Dr. Mark Bear at Brown University. She joined the faculty at University of Texas Southwestern Medical School in 2001 where she is currently an associate professor. Dr. Huber’s career has focused on cellular mechanisms of mammalian synaptic plasticity and development in the normal brain and in the fragile X syndrome mouse model (Fmr1 knockout mice). As a postdoc, Dr. Huber studied metabotropic glutamate receptor (mGluR) dependent synaptic plasticity and discovered enhanced mGluR5 function in Fmr1 knockout mice. This discovery led to ongoing clinical trials using mGluR5 antagonists in FXS patients. More recently, Dr. Huber’s research has focused on determining how Fragile X Mental Retardation Protein (FMRP) regulates synapse development, plasticity and circuit function in the mouse brain. Her work has also contributed to the understanding of the cellular and molecular basis of altered mGluR function in FXS which provides novel avenues for therapeutic development.


9:00 AM – 9:30 AM

Positive Exposures

Rick Guidotticompleted his education in photography and film-making at New York’s School of Visual Arts and established a studio in Manhattan, specializing in portraiture and fashion for 15 years. During that period he also worked in Milan, Paris and London for clients such as Yves Saint Laurent, Elle, Harpers Bazaar, Revlon, L’Oreal and Life Magazine.

In 1998, Rick founded Positive Exposure, a non profit organization, that challenges stigma associated with difference by pioneering a new vision of the beauty and richness of genetic diversity. Rick’s photo essay “Redefining Beauty” in Life Magazine won the Genetic Alliance’s “Art of Reporting” award.

The body of work entitled “Positive Exposure, The Spirit of Difference” premiered at the People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History in DC. and continues to exhibit in galleries, museums and public arenas internationally.

In addition to the exhibition, Rick has developed a lecture series targeting medical schools, nursing and genetic counseling programs as well as universities, elementary and secondary schools worldwide. The lecture series has recently expanded to include a diversity workshop and was introduced at MTV headquarters. Rick is based in New York City.


9:30 AM – 9:45 AM

Presentations:
Early Morning Break


9:45 AM – 11:00 AM in Chopin Ballroom

Panel Presentation

Family-Friendly
Presentations:

Moderator: Marcia Braden, PhD

A Roast to Males with FXS

Michael Cohen, Aaron Heisel, Nick Hertzog


9:45 AM – 11:00 AM in Escorial / Alhambra

Family-Friendly
Presentations:
Residential Placement for Your School-Aged Child

Andy Selinger, Tammy Selinger


9:45 AM – 11:00 AM in Raphael / Michaelangelo

Family-Friendly
Presentations:
What Might the Future Hold for My Child with Fragile X Syndrome?: Stories and Lessons Learned Through the Duke Fragile X Clinic

Gail A. Spiridigliozzi, PhD, Ave M. Lachiewicz, MD, Allyn McConkie-Rosell, PhD, CGC, Debra J. Burgess


9:45 AM – 11:00 AM in Sandringham / Windsor

Family-Friendly
Presentations:
Forward Focus: Positive Behavioral Momentum in Action

Cindi R. Rogers, Tracy M. Stackhouse, MA, OTR/L, Sarah K. Scharfenaker, MA, CCC-SLP

Starting, Synchronizing and Stopping Actions and Feelings

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


9:45 AM – 11:00 AM in Sevilla

Family-Friendly

Spanish Translation Provided

Presentations:
Toilet Training Your Child

Jennifer H. Epstein, PsyD, Karen Riley, PhD


9:45 AM – 11:00 AM in Concourse I

Clinical Practice and/or Research
Presentations:

Symposium: Utilizing Technology to Maximize Learning: Part I

Moderator: David Salomon

Now That’s An App!

Dawn Rohlik, OTR/L

Fragile X and Use of Apps

Laurie Yankowitz, Ed.D, Vicki Sudhalter, PhD


9:45 AM – 11:00 AM in Balmoral

Panel Presentation

Clinical Practice and/or Research
Presentations:

Moderator: Don Bailey, PhD

Our Fragile X World: Using Survey Research to Understand the Nature and Consequences of Fragile X

Melissa Raspa, PhD, Anne Wheeler, PhD


11:00 AM – 11:15 AM

Presentations:
Late Morning Break


11:15 AM – 12:30 PM in Balmoral

Family-Friendly
Presentations:
TBD


11:15 AM – 12:30 PM in Chopin Ballroom

Panel Presentation

Family-Friendly
Presentations:

Moderator: Laurie Yankowitz, Ed.D

Living the Fragile X Way

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

Adults in Action: Services and Strategies for Successful Living

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


11:15 AM – 12:30 PM in Escorial / Alhambra

Family-Friendly
Presentations:
Setting the Stage for Success: Effective Strategies to Support Behavior and Learning in School-Aged Students with Fragile X Syndrome

Barbara Haas-Givler, MEd, BCBA


11:15 AM – 12:30 PM in Sandringham / Windsor

Family-Friendly
Presentations:
Making Fundraising Fun

Holly Usrey-Roos

How to Organize an Educational Seminar

Andy Selinger, Tammy Selinger


11:15 AM – 12:30 PM in Sevilla

Family-Friendly

Spanish Translation Provided

Presentations:
Why We Love People with Fragile X Syndrome

Vicki Sudhalter, PhD, Susan Cohen


11:15 AM – 12:30 PM in Concourse I

Family-Friendly
Presentations:

Symposium: Utilizing Technology to Maximize Learning: Part II

Moderator: Robert M. Miller

We Care: An application for building “care packages” and using private social networks to empower people with special needs

Faheem Ahmed

Panel: An interactive discussion amongst technology proponents

Faheem Ahmed, Dawn Rohlik, OTR/L, Laurie Yankowitz, PhD, Kerrie Lemons Chitwood, CCC-SLP, Laura Greiss Hess, OTR/L


11:15 AM – 12:30 PM in Raphael / Michaelangelo

Clinical Practice and/or Research
Presentations:
The Influence of Hyperactivity, Impulsivity, and Attention Problems on Social Skills in Adolescents and Young Adults with Fragile X Syndrome

Lindsay C. Chromik, MS, Eve-Marie Quintin, PhD

AD/HD and FXS: Conceptualizing & Diagnosing AD/HD Using the DSM IV TR; and Explore AD/HD in an Australian Clinical Sample

Astra King

Math and Conservation in Children with FXS

Pamela K. Gallego, MA

TBD


12:30 PM – 2:00 PM in Chopin Ballroom

Workshop

Family-Friendly
Presentations:
Lunch
It’s Not About My Kids; It’s About Me

Facilitated by Arlene Cohen with Randi Hagerman, MD

An informal discussion about symptoms that carrier mothers may be experiencing. In additional, there will be a Q&A session and please bring your own lunch.


2:00 PM – 3:15 PM in Balmoral

Family-Friendly
Presentations:
iCanChat: Creating Meaningful Language Experiences Through Assistive Technology

Monica Dowling, PhD, Michelle Schladant, PhD

Finding My Voice: Helping Individuals with Fragile X Syndrome Become Better Communicators with LAMP and AAC

Michelle Schladant, PhD, Monica Dowling, PhD


2:00 PM – 3:15 PM in Chopin Ballroom

Family-Friendly
Presentations:
Bringing out the Best in Fragile X through Person-Centered IEP Transition Planning

Laurie Yankowitz, Ed.D.


2:00 PM – 3:15 PM in Escorial / Alhambra

Family-Friendly
Presentations:
How to Think like an OT at Home!

Kristin Burgess, MS, OTR/L

Family Issues From the Sibling Perspective

Kristin Burgess, MS, OTR/L, Cassie Weber


2:00 PM – 3:15 PM in Sandringham / Windsor

Family-Friendly
Presentations:
Dental Issues in the Fragile X Population

Edward Lee Perlow, DDS, PC


2:00 PM – 3:15 PM in Sevilla

Family-Friendly

Spanish Translation Provided

Presentations:
Sex in the City Is Not Just a Miami Vice

Brenda Finucane, MS, CGC, Marcia L. Braden, PhD


2:00 PM – 3:15 PM in Concourse I

Family-Friendly
Presentations:
Using RtI to Improve and Advance Evidence Based Educational Interventions

Karen Riley, PhD

Behavioral Intervention for Problem Behavior in Children With Fragile X Syndrome

Lauren J. Moskowitz, MA


2:00 PM – 3:15 PM in Raphael / Michaelangelo

Presentations:
TBD


3:15 PM – 3:45 PM

Presentations:
Afternoon Break


3:45 PM – 5:00 PM in Chopin Ballroom

Family-Friendly
Presentations:
Bringing You Protected Tomorrows: Your Journey Through an Eight Step Special Needs Planning Program

Mary Anne Ehlert


3:45 PM – 5:00 PM in Concourse I

Family-Friendly
Presentations:
Hands-On “Make & Take” of Visual Support Tools:  How to Translate Fragile X Clinic Recommendations to the “Real World”*

Deby Burgess, Kristin Burgess, OTR/L, Ave Lachiewicz, MD, Gail Spiridigliozzi, PhD, Allyn McConkie-Rosell, PhD, Dawn Rohlik, OTR/L

* This session is repeated from Thursday at 9:45 AM


3:45 PM – 5:00 PM in Raphael / Michaelangelo

Family-Friendly
Presentations:
Language Development and Intervention in Children with Fragile X Syndrome: Research Findings and Strategies for Parents

Leonard Abbeduto, PhD, Andrea McDuffie, PhD


3:45 PM – 5:00 PM in Sandringham / Windsor

Family-Friendly
Presentations:
Talking to Students about Fragile X Syndrome

Holly Usrey-Roos


3:45 PM – 5:00 PM in Sevilla

Family-Friendly

Spanish Translation Provided

Presentations:
My Hands Can Write! My Fingers Can Tie!

Jamie McGrew, MS, OTR/L, Tracy M. Stackhouse, MA, OTR/L


3:45 PM – 5:00 PM in Escorial / Alhambra

Family-Friendly
Presentations:
Moving Forward with the NFXF: Q&A with Representatives from the Team and Board

Robert Miller


3:45 PM – 5:00 PM in Balmoral

Clinical Practice and/or Research
Presentations:
Evidence Based Practice Research for Educational and Therapeutic Interventions in Fragile X Syndrome

Gail Harris-Schmidt, PhD, CCC-SLP, Marcia Braden, PhD


6:00 PM – 7:30 PM

Presentations:
Banquet Reception

Cash Bar and Silent Auction


7:30 PM – 11:00 PM

Presentations:
Banquet

Dinner, Dancing, Silent and Live Auctions.

Topics, times and speakers are subject to change.
Updated: July 15, 2012