Mission: Xtraordinary JOY is dedicated to empowering families affected by rare developmental diagnoses through research, community and advocacy...
so no family ever feels alone
Research
fuels hope
Xtraordinary JOY provides research grants for X-chromosome deletion research that advances lifelong health, behavior, and learning. We understand that families deserve answers to basic and complex health concerns.
What this looks like in action:
- Funding grants to scientific researchers
- Creating specimen biorepository and gene database
- Scientific symposiums
- Research publications
- Connecting research insights to make global impacts for autism, developmental disorders and beyond
Community
provides strength
Xtraordinary JOY creates inclusive, welcoming spaces where families affected by disabilities can connect, feel supported, and experience joy together. We believe community is essential to resilience. Through events, gatherings, and shared experiences, we work to reduce isolation and foster meaningful relationships among families navigating similar journeys.
What this looks like in action:
- Hosting inclusive events, camps, and community activities
- Creating opportunities for families to connect and support one another
- Promoting inclusion for individuals of all abilities
- Celebrating milestones, strengths, and moments of joy
- Ensuring families feel seen, valued, and supported beyond a diagnosis
Advocacy
creates change
Xtraordinary JOY advocates for individuals and families affected by rare conditions by increasing awareness, promoting inclusion, and elevating voices that are often unheard. We work to educate communities and partners about the realities of rare disease while encouraging compassion, understanding, and systemic change.
What this looks like in action:
- Raising public awareness about rare and complex conditions
- Advocating for inclusion, accessibility, and dignity in all spaces
- Empowering families to share their stories
- Partnering with organizations and community leaders to expand impact
- Challenging stigma and fostering understanding
OUR STORY
In 2014 we adopted Moriah Joy. Our story is one of patience, joy and unexpected discovery of a rare X chromosome deletion that has led to the formation of Xtraordinary Joy, Inc.
Established in 2016, our vision for Xtraordinary Joy, Inc. is to raise funds that will promote clinical interventions, therapies and care opportunities for children afflicted by never-before-studied X chromosome deletions.
Your donation can make a difference for Xq27-q28 Deletion research at the University of Florida Medical Research Center.
RESEARCH AT UF
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. READ ABOUT THE RESEARCH.
Faces of Xq27-q28 Deletion
