Xtraordinary Joy Resources Page
Resources
Xq27-q28 DELETION
Possible symptoms
- Low muscle tone resulting in delayed crawling, walking
- Sensory Processing Disorder
- Gag reflex, swallow difficulty, sucking difficulty, oral aversion, teeth grinding
- Drooling
- Chronic sinus and ear infections
- Autism; non-verbal
- Seizures
- Intellectual disability
- Constipation
- Some families have reported breathing issues, organ anomalies, growth problems
Underlying disorders within deletion
- Fragile X Syndrome due to FMR1 gene deletion: Fragile X Syndrome
- Hunter Syndrome (Mucopolysaccharidosis II) due to IDS gene deletion: Hunter Syndrome
University of Florida scientists are teaming up to examine the effects of gene deletion on biochemical pathways and attempt to rescue brain circuitry with targeted therapies.
Local (Gainesville, FL) Resources and Partnerships:
- GiGi’s Playhouse Down Syndrome Learning Center
- Celebration UMC Respite Nights
- Center for Autism Related Disorders – CARD
- Early Steps
- Family Café
- UF XJOY Student Chapter
- Night to Shine Special Needs Prom
- Alachua County Special Needs Facebook Group
- Rare Genetic Syndrome Facebook Support Group
Listen to this Made in Gainesville podcast episode featuring Amy Meacham discussing the Xtraordinary Joy organization as well as her experience with X-chromosome deletion disorders: Amy Meacham – Made in Gainesville
National Chromosome Disorder Registries:
Xtraordinary Joy works to further its mission through a wide variety of events in the Gainesville area. Below are a few past events that Xtraordinary Joy has hosted or been a part of:
- Disability Resource Fair
- Night to Shine Prom for Special Needs
- Virtual 28 Mile JOY Challenge
- Human Foosball Tournaments
- Xtraordinary Joy Masquerade Ball
Virtual 28 Mile JOY Challenge Human Foosball 2019 UF Homecoming Parade Masquerade Ball 2019 Night to Shine 2019 Human Foosball Shirt Pickup 2020 Virtual 28 Mile JOY Challenge Masquerade Ball 2019 Disability Resource Expo 2019