Premutation Carriers FXAND, FXPOI, FXTAS and Everything in Between

Premutation Carriers FXAND, FXPOI, FXTAS and Everything in Between

A conference for the Fragile X community
presented by The Kansas Chapter of the National Fragile X Foundation and the University of Kansas Center for Autism Research and Training (K-CART)

Saturday November 2, 2019 • 8:30 am - 3:00 pm
University of Kansas Edwards Campus


Two boys

Please join us for the 7th New Directions in Fragile X Conference on Saturday, November 2 at the University of Kansas Edwards Campus. This conference is for the entire Fragile X community, including researchers, family members, care givers, educators, therapists, and individuals who want to learn more about Fragile X - associated disorders. (image credit: fragileX.org)

Register here (separate site)

Sponsored by:

Fragile X foundation

  

KCART


Agenda


8:30-9:00 Registration and continental breakfast

9:00-9:15 Introductions

Brooke Stack — Co-Leader of the NFXF Kansas Chapter

Steve Warren, Ph.D. — Investigator, Schiefelbusch Institute for Life Span Studies, University of Kansas

9:15-10:15 Premutation Carriers: FXAND, FXPOI, FXTAS and Everything In Between.

 Randi Hagerman, MD - Medical Director, UC Davis MIND Institute

10:15–10:30 Break

10:30-12:00 Premutation Carriers, cont.

12:00-12:45 Lunch provided

12:45-1:15 Matthew Mosconi Ph.D. — Director, Kansas Center for Autism Research

and Training (K-CART)

1:15-2:15 Working at King Soopers — Our Local Grocery Store & Lessons Learned Along the Way. 

Jayne Dixon Weber – Director, Community Services, National Fragile X Foundation

2:15-3:00 Questions Panel and Networking

Limited scholarships are available. Please email kansas@fragilex.org for more information.

On-site childcare is available through the Kansas LEND program.   There is no charge for this service. Lunch for children is an option that can be chosen during registration. Please email kansas@fragilex.org with any additional questions.

Register here (separate site)

 

Featured speakers


Randi Hagerman

Randi J Hagerman, MD

Dr. Hagerman is medical director of the UC Davis MIND Institute and director of the Fragile X Research and Treatment Center. She has more than 20 years of experience in the field of neurodevelopmental disorders and is an internationally respected leader in fragile X research including fragile X syndrome, a genetic condition that is the leading cause of inherited intellectual disability and the leading single-gene cause of autism.


Dr. Hagerman, her husband, Dr. Paul Hagerman, and their research team are the discoverers of Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), a late-onset neurodegenerative disorder. Randi Hagerman conducts clinical research on individuals with fragile X-associated disorders, including children and adults with fragile X syndrome, adult males with FXTAS, and women with fragile-X related conditions, such as fragile X-associated primary ovarian insufficiency (FXPOI). Dr. Randi Hagerman also conducts research that bridges the association between autism and fragile X syndrome. Her main area of research is on targeted treatments for neurodevelopmental disorders, including fragile X syndrome, autism, premutation disorders and Angelman syndrome.

Matt Mosconi

Matthew W Mosconi, Ph.D.

Matt Mosconi currently is the Director of the Kansas Center for Autism Research and Training (K-CART), Associate Professor of Psychology and Applied Behavioral Science, and Interim Associate Director of the Life Span Institute. His research is focused on sensorimotor dysmaturation and underlying brain mechanisms in neurodevelopmental disorders, including autism spectrum disorder, Phelan-McDermid Syndrome, and FMR1 related disorders. His work has been supported by NIH (NIMH, NINDS, NICHD), the Department of Defense, Autism Speaks, the Phelan-McDermid Syndrome Foundation and the Once Upon A Time Foundation. He has published in multiple high impact journals including JAMA Psychiatry, the Journal of Neuroscience, Journal of Neurophysiology, Molecular Autism, NeuroImage and Biological Psychiatry. Dr. Mosconi serves on the editorial boards of the Journal of Autism and Developmental Disorders Research in Autism Spectrum Disorders, and Frontiers in Integrative Neuroscience.

Jane Dixon Weber

Jayne Dixon Weber


Jayne Dixon Weber is director of community services at the National Fragile X Foundation and has been a member of the NFXF team since 2007. She has two children, an adult son with Fragile X syndrome and a daughter. Jayne authored the book Transitioning “Special” Children into Elementary School and was the editor for the book Children with Fragile X Syndrome: A Parents’ Guide