Xtraordinary Joy

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Xtraordinary Joy

Xtraordinary Joy will fund research to discover treatments for rare X chromosome deletion She is missing 76 genes on her X chromosome at Xq27.3-28.

Our beautiful Moriah Joy was diagnosed at 16 months with an extremely rare chromosome abnormality. We have now found over 30 kids in 8 countries with deletions in this region, although none are identical. Because it is so rare, there are no treatment options. There is no disease name, no scientific research (except ours now), no awareness events. It has taken us months of seeing specialist after s

pecialist with no understanding of her condition to help us realize it is up to us to help her. We felt called to start a foundation, Xtraordinary Joy, that will advocate for these kids’ special needs and recruit revolutionary research efforts to discover treatment options. We invite you to be a part of something great, eXperience the JOY of helping establish the groundwork for helping our girl and others. Read more at our blog https://messagethatbringsjoy.wordpress.com/

08/20/2026

I recently had the privilege of being interviewed by C Robinson Associates on behalf of "as a valued community partner", to give my "perspective to help understand current gaps, barriers and opportunities for coordination." So of course I gave them my experiences and insight. Then they asked me what I would do if I had unlimited resources. Weeeeeellllllll. Actually I have considered that so I was fully prepared to give them my dream. I said I am just waiting on someone to give me the Mall. Yes, I have a board, staff and even registered school entity just waiting for the space to fill classrooms and halls with students of all ages and abilities. I guess we would need a few more employees and some cool equipment to make the most inclusive school ever. I shared more about how our camp modeled the achievement center of my dreams: all ages and abilities together, understanding they all belong and were created with a role and purpose. Sooooooo if you know anyone that wants to give us the mall, or another building we can grow in, I know some people ready to start that school.

Photo of Mo and mom at the mall. These ride-ons could totally be repurposed!😆

08/18/2026

Our student organization UF Student Chapter 🐊 is starting up for the new school year soon. And that means new energy helping us promote and achieve our cause. Whether you are a student or in a different age group, we can plug you in to Xtraordinary things happening this fall. Illuminate JOY with us Aug 30, and Xperience Nov 14.
DM, email or website contact page to reach out.

Info Graphic made by UF student interns.

08/12/2026

Moriah was eXcited to start school and see her friends and new teacher at Shine School
School hasn’t always been met with enthusiasm as she struggles to comprehend basic math, reading and writing. But she got into a groove with a great school last year and was ready and eager to get back. I am thankful for this New year! New positive outlook! More JOY! I know drop-off Dad is too. Tony Meacham
Amy Meacham

08/09/2026

Let's Glow Crazy and i11uminate JOY August 30th 5-7 pm (new time) at our partner This FREE back-to-school event will have glow in the dark games and prizes for ALL abilities. No RSVP necessary. Mark your calendars so you don't miss out.

08/08/2026

We are so eXcited to be teaming up with , and for Athlete Causes. It’s opening day of the AUSL All Star Cup season! Help us cheer on Kenleigh as she plays for Xtraordinary JOY this month!

Watch tonight 7pm Team Corrick on ESPNU

08/05/2026

It was such an honor to moderate a first year medical school course on genetics today after they learned about X chromosome disorders and X inactivation. My first slide highlighted our diagnostic journey. Before genetics testing, Moriah was already seeing numerous specialists. After we had a diagnosis, we registered the chromosome disorder with and . This enabled us to find a few families struggling with this and cancer, uncontrolled seizures, muscle degeneration and chronic lung infections. We knew we had to start research. Community and Advocacy came naturally as we grew in knowledge, numbers and JOY!

08/02/2026

XJOY VP took me away for some rest and Vitamin Sea. And I am pleased to report that your President has indeed been restored and energized, even inspired to start the second half of 2026 with more JOY! Thank you Tony Meacham
And thank you Father.

08/01/2026

Love seeing our UF Student Chapter 🐊 students out advocating, recruiting and informing others about Xq27.3-28 deletion and spreading some JOY! Let’s grow!

07/31/2026

Good news for you! Our Xecutive leaders have voted to Xtend the Xtraordinary sale on our new Xperience gala with comedy show. So use these Xtra days to get your deeply discounted tiX.
Www.Xtraordinaryjoy.Org

07/29/2026

Moriah is helping the cause and wants you to know 2 things:
1. She will deliver Blaze pizza tickets if you buy NOW for $12 donation/pizza
Www.Xtraordinaryjoy.Org is simplest donation platform but we can take cash and checks too. Send us a message
2. She likes the Strawberry Shortcake socks her buddy Paige gave her. And if you know Mo, you know how she loves her accessories.

Address

2603 NW 13th Street #327
Gainesville, FL
32609

Website

http://www.XtraordinaryJoy.org/

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