Xtraordinary Joy

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Gainesville, FL
Xtraordinary Joy

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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 specialist 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/

10/21/2026

Since you all are asking...YES--let's still dress in our best. NO--do not bring masks.
This year our gala is in a new venue. And has a new look. Of course our pink will be on display, but we will also add some purples and greens to illuminate the Champions Club for Advocacy, Research and Community, highlighting the foundational pillars we have adopted this next decade. Cannot wait to see you all November 14th. There are still a few sponsorships and tickets (but not many) available on our event page of www.xtraordinaryjoy.org

10/13/2026

Since our gala is just one month from tomorrow, November 14th, prices will increase. We love that so many have benefited from the extended sale and hope you will get your discounted tickets NOW until this Thursday. This huge event is replacing our Masquerade and is sure to be the most Xtraordinary Xperience, complete with professional comedian, auction, raffles, catered dining and cocktails, and DJ dance.

10/12/2026

We will be hosting a craft for joy social with Down To Dance on October 22nd! We will be making goodies to bring smiles on our kids’ faces at our upcoming trunk-or-treat! Join us for a crafty time and spooky snacks 🎃

10/08/2026

Mark your calendars and register NOW to volunteer with us at 2027 Night to Shine February 5th at the O'Connell Center! Lots more details here at https://www.ntsgatornation.com/volunteer
If you wish to serve with Xtraordinary JOY in the Sensory Room, select "Event Contributors" and then type in Sensory Room when prompted. We are eXcited as ever to be a part of this amazing event, in a new supportive role to provide a soothing space for guests. If you are a caregiver or guest that would like to provide us any suggestions, we would love your feedback https://www.xtraordinaryjoy.org/contact

09/27/2026

When your sponsors in Ohio are excited to sport their Xtraordinary Camp shirts! How adorable is this kind of support! And necessary. We rely on generous donations to our 501c3 to fund outreach and research efforts for rare genetic conditions. I know I still have a few shirts to deliver. Let me know if you are waiting on yours. Thank you all.

09/20/2026

We loved seeing our Xq Cuties around the world join our annual Scavenger Hunt. What a blessing to see this much JOY! No kangaroos this time, but we did see a pet rat and pet cat along with lots of well loved items that bring out the smiles. And of course those awesome mamas that keep advocating and loving! Thank you for organizing such a creative event.

09/10/2026

We are making it easy to partner with a local charity doing good in the community and spreading JOY! Sponsor the new Xtraordinary Xperience November 14th at UF's Champions Club for a fantastic evening of comedy, dancing, dining and winning on so many levels. We need YOU! www.xtraordinaryjoy.org event or partner page for links to donate your sponsorship level.

09/09/2026

Xtraordinary JOY is thrilled to honor eXemplary leadership and service in our foundational pillars of “Community/Research/Advocacy/Overall Xtraordinary JOY” at our gala November 14th 6pm-10pm at UF’s Champions Club. This inaugural awards ceremony recognizes of Legends FC, Dr. Coy Heldermon , .abby and Hacht and and Claudia Gallup at and We invite you to come celebrate these Xtraordinary community members. Tickets to the Xtraordinary Xperience get you a wonderful evening with comedian, dancing, auctions, dining and more. Visit the events page at www.xtrarodinaryjoy.org for ticket link https://xtraordinaryjoy.app.neoncrm.com/forms/18

09/07/2026

Our 2026 is sure to be full of laughs. Forget your mask this year, but bring your sense of humor and be ready to Xperience JOY with a packed night including comedian Jody Fuller
You can still sponsor and reserve tickets for November 14th gala at www.xtraordinaryjoy.org (events tab)

Address

2603 NW 13th Street #327
Gainesville, FL
32609

Website

http://www.XtraordinaryJoy.org/

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