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Please join us for the Fragile X Southwest Community Event organized by Phoenix Children’s Hospital to be held on July 13, 2019.

The event is designed to provide families with an opportunity to:

  • discuss topics and concerns relevant to the diagnoses and treatment of Fragile X Syndrome (FXS)
  • learn more about research being conducted in Fragile X and other conditions including Autism, Mitochondrial Dysfunction and language delays

Agenda

(Subject to Change)

 

10:00 AM – 11:00 am (light refreshments provided)

Richard Frye, MD, PhD, Phoenix Children’s Hospital
Overview of current clinical work in FXS and other conditions

11:00 am– 12:00 pm

Jayne Dixon Weber, Director, Community Services, National Fragile X Foundation (NFXF)
Lessons learned from raising a son with FXS from childhood to an adult.  Information about the NFXF.

12:00 pm – 12:30 pm – Lunch (provided)

12:30 – 1:00 pm

Joel Hanania, PhD, Psychologist, Phoenix Children’s Hospital
Discussion of issues that individuals with FXS experience in school and seeking services

1:00 pm – 1:30 pm

Christopher Smith, PhD, Southwest Autism Research & Resource Center (SARRC)
Overview of services provided and research being conducted at SARRC

1:30 pm – 2:30 pm

Parent Panel
Parent perspectives on raising children with FXS.  Discussion of strategies used in daily lives, diet, occupation and physical therapies.

2:30 pm – 3:00 pm

Occupational Therapy (TBA)
Discussion of service available for children with FXS

3:30 pm – 4:00 pm

Richard Frye, MD, PhD and Jayne Dixon Weber
Closing remarks

3:30 pm – 4:00 pm

Hospital tour (optional)

**Childcare services will not be provided.

PLEASE RSVP BELOW by Friday, June 28, 2019