13th International Fragile X Conference
July 25-29, 2012 Miami, Florida
The National Fragile X Foundation’s biennial international conference is highly regarded and well-known for bringing together families, researchers, doctors, therapists and educators in a setting that is specifically designed to optimize interaction among families and professionals. Increased collaboration between researchers, improved treatment skills of professionals, optimized development of individuals affected by Fragile X and increased understanding and well-being of those impacted by the disorders are the most significant outcomes often sited by previous conference attendees.
The first International Fragile X Conference was a two day event in 1987 held in Denver Colorado with about 150 attendees. Since then it has passed through cities including Albuquerque, Portland, Asheville, Los Angeles, Chicago, Washington DC, Atlanta and Detroit with growing attendance numbers. 2012 will bring the 13th International Fragile X Conference to Miami, FL where we expect over 1,000 attendees.
We present a unique opportunity where researchers and parents can interact throughout the conference. Many a researcher have commented on the experience of socializing with the parents of children with Fragile X, and how the experience has motivated them or reinvigorated their enthusiasm to make a difference in the lives of persons with this disability. The majority of the conference sessions are “Family-Friendly” and cover all three Fragile X conditions (FXS, FXTAS, FXPOI), with the greatest number of sessions focusing on FXS. In addition to the family-friendly sessions there are many scientific and technical sessions. Some of the benefits from attending include:
Discover the latest research by some of the world’s leading Fragile X experts.
Learn new techniques, behavioral interventions and coping strategies.
Connect with researchers clinicians, educators, psychologists and parents.
Get the support you need.
Start a new lifelong friendship and reconnect with old friends.
The objectives of the conference are:
To provide a forum in which professionals from the Fragile X and intellectual disabilities fields can present their scientific, clinical or scholarly work;
To present a general program that will be informative and of interest to all conference participants;
To facilitate the exchange of research, intervention strategies and information relating to all Fragile X-associated Disorders (FXD) including fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI).
Presentation topics will include medical treatments, speech, language and occupational therapies, educational techniques, opportunities for self-determination and independence, genetic counseling strategies and mental health interventions throughout the lifespan.
Based on the ongoing development of new therapies, the conference will include a focus on:
Both pharmacological and non-pharmacological interventions (current and anticipated)
Evaluation tools
Evolving screening and diagnostic technologies
The conference will also highlight basic science presentations on:
The functions of FMRP
The molecular and cellular mechanisms in FXS, FXTAS, and FXPOI
Studies in animal models of FXD
The conference will include a wide variety of other subjects including:
Alternative interventions
Public policy and legislative advocacy
Legal and ethical issues
Sibling issues
Parent to parent support
In addition to presentations from the professional community, parent-led workshops and discussions will also be conducted.
Abstract Topics include:
Academic and Behavioral Interventions and Strategies
ADHD & Disorders of Attention and Impulse Control
Adult Issues and Aging in FXS
Advocacy, Policy Issues: Public and Private Partnerships
Assistive & Augmentative Technology/Computer Enhanced Learning
Autism and FX Studies/Issues/Diagnosis
Clinical Trials of Targeted Treatments
Early Intervention: 0-5 years
Family Dynamics
Financial Planning/Insurance/Grants
FMRP & Molecular/Cellular Studies/Animal Models
FXPOI Clinical Issues
FXTAS: Neuropathology/Non-CNS pathology
FXTAS Caregiving and Clinical Issues
FXTAS/FXPOI Molecular and Cellular Research/Animal Models
Genetic Counseling Issues
Inclusion/Mainstreaming
Molecular Clinical Correlations
Neuroimaging Studies
Neurological and Medical Issues in the Premutation
Neurological and Medical Issues in FXS
Non-traditional Interventions
Occupational Therapy/Sensory Integration
Psychological Therapies and Non-pharmacological Treatment (Behavioral, Cognitive Treatment Trials, etc)
Psychotherapeutic Interventions
Premutation Carrier Studies/Issues and Premutation Clinical Involvement (non-FXTAS)
Prevalence, Screening, Early Diagnosis Strategies & New Testing Technologies
Psychological, Behavioral and Social Studies and Testing in FXS
Psychopharmacologic Treatment of Behavior and Co-morbid Conditions in FXS
Reproductive Options
Self Help Skills: Dental, Eating, Toileting, Other
Service Delivery: Clinic & Non-Clinic based/Rural Outreach/Underserved Populations
Sexuality: Lifespan issues
Special/Unusual/Challenging Cases and Families (lessons learned from these cases)
Speech & Language Studies/Intervention
Targeted Molecular/Cellular Interventions in FXS Models
Treatment Efficacy: Biomarkers/Translational Outcome Measures in FXS
Transitions throughout the Lifespan
