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December Newsletter!

End of Year Appeal



Year-End Giving is the Chromosome 18 Registry & Research Society’s most important fundraiser of the year. Your tax-deductible gift helps fuel the research that is moving chromosome 18 conditions closer to becoming the first treatable chromosome abnormalities.


Your support sustains vital research at the Chromosome 18 Clinical Research Center, trusted education and resources, and the community programs families rely on. It takes $350,000 each year just to keep the Research Center's doors open — and 80% of our funding comes from families and supporters like you.

Whether you give through a traditional donation, DAF, stock, or cryptocurrency, this is your final chance to make a year-end gift that brings hope, answers, and connection to families around the world!

World Chromosome 18 Day Recap



On December 7th we celebrated our 4th Annual virtual World Chromosome 18 Day! It was wonderful to see so many faces, both familiar and new, come together to celebrate the very heart of our organization. It truly was a perfect blend of connection, education, and fun!


Thank you to all the amazing speakers, presenters, syndrome and regional breakout group leaders, dance party hosts, and Santa & Mrs. Claus for making our 4th Annual World Chromosome 18 Day such a special virtual event. If you weren't able to attend, be sure to check out our recorded sessions with chromosome 18 experts including Dr. Jannine Cody, Dr. Jon Gelfond, Dr. Kameel Karkar, and Dr, Daniel Hale.

Welcome Audrey Harzke to our Team



Audrey Harzke joined the team this month as our Community Impact Coordinator! She is eager to get to know everyone and work towards our mission. Learn more about Audrey here.

Upcoming Events



Office will be closed for the holidays - January 1st


New Family Resource and Intro Call - January 14th at 7 pm (CT)


Facebook Live featuring Jaron & Laurel Sheppard- January 18th at 6 pm (CT)


Weston's Cornhole Tournament - February 1st at 11 am (CT)


Pennies For Perri - March 7th (registration will open early January)


Starfish Camp - March 12th - 15th



Starfish Dash 5k Run / Walk & Health Fair San Antionio (TX & Virtual Event) - April 25th

Clinical Research Center



Each month, the C18 Research Team shares important updates shaped by the work they do for Chromosome 18 families. This month they shared updates on all the wonderful research going on including applying AI to extract data from medical records, bone density study for people with Tetrasomy 18p, creating an 18q- mouse model for drug testing, and creating a cell-based assay for drug screening. Click HERE to learn more.

Jonathan Gelfond, M.D., Ph.D.

4 Bridges in Australia Light Up for World Chromosome 18 Day



Australia celebrated World Chromosome 18 Day in the cities of Brisbane, Darwin, Geelong and Perth. Landmarks were illuminated across each city to raise awareness of chromosome 18 conditions. Some of our chromosome 18 families and friends were able to gather to view the lights. It was an absolute joy to see landmarks lit up in the chromosome18 colours.  

Online Hotel Booking for Conference is Now Open


Join us from July 12th to 15th, 2026 for our Annual Family Conference in San Antonio, TX. We are happy to announce that we will be staying at The Westin San Antonio North. Reserve your room today by calling 1-844-886-4304 and use the group block name: Chromosome 18 Annual Conference, or BOOK ONLINE HERE.

New Community PowerPoint Resource



We’ve put together a Community PowerPoint that you can use to help friends, schools, churches, and local groups learn more about Chromosome 18 and the amazing community we’ve built! Help us spread awareness by sharing our community with yours! Download it HERE.