The Chromosome 18 Registry & Research Society

The Chromosome 18 Registry & Research Society Chromosome 18 U.S.A. Our mission is to defeat the challenges of those born with chromosome 18 conditions so they can lead healthy and productive lives.

A massive thank you to all who got involved in our 2026 challenge! The challenge ended August 18th, and together, we b...
08/21/2026

A massive thank you to all who got involved in our 2026 challenge! The challenge ended August 18th, and together, we blew our fundraising goal of $40,000 out of the water and raised over $60,000! šŸŽ‰

This has been our biggest Power of 18 yet -- because of you! Thank you to every one of you who participated, donated, and cheered our teams on. With an incredible 980 total donors this year, every team, every donation, and every action to build community and awareness made a difference. Every dollar raised helps Chromosome 18 continue providing families around the world with the support, education, and research they rely on. Your support helps connect families with a community that understands their journey, provides access to trusted information and resources, and advances research toward a future with better answers and treatments for Chromosome 18 conditions.

Thank you for turning the Power of 18 into the power of hope, connection, and progress for our families! Thank you for proving the !

08/20/2026

Join us every Tuesday for a new educational video from one of the leading chromosome 18 experts! We're kicking off Chromosome 18 Answers with our August series on Seizures and chromosome 18.

This Thursday, we answer a bonus question: "Are seizures common in chromosome 18 conditions?"

Dr. Karkar, Medical Director and Clinical Associate Professor of Neurology at the Chromosome 18 Clinical Research Center, discusses findings from a recent survey of Clinical Research Center participants. Nine of the 10 condition groups surveyed reported seizure and epilepsy rates higher than rates in the general population. Reported results varied considerably by condition.

Tune in next Tuesday to learn more about seizures and chromosome 18, and hear Dr. Karkar answer: "How do I know if my child is having a seizure?"

Learn more at chromosome18.org.

Families in the West Region, join other Chromosome 18 families for a summer pool party and pot luck in Napa, CA THIS WEE...
08/20/2026

Families in the West Region, join other Chromosome 18 families for a summer pool party and pot luck in Napa, CA THIS WEEKEND 11am to 1pm PT on Sunday, August 23rd!

Join us for a delightful day brimming with sunshine, togetherness, and a lovely potluck pool party. Bring pool towels and your favorite side dish to share. Hosts will provide fried chicken and drinks, along with lifeguards and all the pool toys!

Registration closes tomorrow (Friday, August 21st) at 3pm CT! Sign up here: https://www.chromosome18.org/event/northern-california-pool-party-potluck/

šŸ‰Great Plains families, our summer picnic in Des Plaines, Illinois is this Sunday from 12 - 4 pm, August 23rd! Join us ...
08/20/2026

šŸ‰Great Plains families, our summer picnic in Des Plaines, Illinois is this Sunday from 12 - 4 pm, August 23rd!
Join us for a delightful day brimming with sunshine, togetherness, and a lovely potluck picnic in the park. Bring along your own picnic and share food and drinks with other Chromosome 18 families. The picnic will be at the Lake Park North Shelter. A playground, nature walks, and splash pads nearby provide plenty of fun to enjoy.

šŸ’«Registration closes this Friday, August 21st at 3:00pm! Find more details and sign up here: https://www.chromosome18.org/event/great-plains-picnic-in-the-park/

Next month, Chromosome 18 will be hosting our virtual Clinical Research Center Tour live on Facebook! Click here to lear...
08/20/2026

Next month, Chromosome 18 will be hosting our virtual Clinical Research Center Tour live on Facebook!

Click here to learn more and register over Zoom for the second half of the tour (Q&A with Dr. Cody): https://www.chromosome18.org/event/connect-with-dr-cody-clinical-research-center-tour-virtual/

What is the Clinical Research Center Virtual Tour?

Our Clinical Research Center Virtual Tours are about 45-minute live virtual tours led by Chromosome 18 founder Dr. Jannine Cody. This exclusive, completely free tour starts on our Chromosome 18 page as a livestream. Viewers get an inside look at the Clinical Research Center and the lab where Chromosome 18 research takes place. After the initial 20 to 30-minute tour of the facility, Dr. Cody switches over to Zoom. On Zoom, viewers can participate in a live Q&A with Dr. Cody. This is a great opportunity to connect directly with the leading expert in Chromosome 18 research!

Join us first on Facebook Live to virtually tour the Clinical Research Center. Anybody can tune in to our public page to check it out! After finishing the tour, we will switch over to Zoom, where you will have a chance to ask your questions directly to Dr. Cody. You can register for the tour by clicking the link above. We hope to see you there!

Families in our Texas Area Region! We have an event for you!Make a difference in the lives of special-needs Chromosome 1...
08/19/2026

Families in our Texas Area Region! We have an event for you!

Make a difference in the lives of special-needs Chromosome 18 children, adults, and their families. Join us for a fun afternoon of co****le at Chicken n' Pickle in Grapevine on Sunday, October 25, 2026 starting at 11am.

All ages and skill-levels welcome! Silent auction proceeds will go to Chromosome 18 research! Food and beverages will be available for purchase.

Register here: https://form.jotform.com/260395434053152

08/19/2026

Welcome back to Chromosome 18 Answers! Today, we are continuing on with the Chromosome 18 Answers August series on Seizures and chromosome 18.

This Tuesday, we answer "What does a seizure look like"

Dr. Karkar, Medical Director and Clinical Associate Professor of Neurology at the Chromosome 18 Clinical Research Center, explains that seizures may include loss of awareness, body rigidity, rhythmic movements, staring, lost time, unusual sensations, sudden body twitches, or changes in behavior.

Tune in next Tuesday to learn more about seizures and chromosome 18, and hear Dr. Karkar answer how to know if your child is having a seizure.

Learn more at chromosome18.org.

08/18/2026

The Kienstra family joined the Power of 18 Challenge for the first time in 2025 in honor of their son, George, who is 8 years old and has 18q-. After an incredible first year of fundraising, they returned for 2026 with a creative challenge inspired by something George loves: "George's Suds Squad!"

For this yearā€™s challenge, the family is washing 18 cars over 18 days. Their challenge is also a special way to give back to the friends and family who supported them last year by rolling up their sleeves and washing their supportersā€™ cars.

Join us for 18 minutes as we talk with the Kienstra family about George, their Chromosome 18 journey, what inspired them to get involved with the Power of 18, and how they turned one of Georgeā€™s favorite activities into a fun and meaningful fundraiser. Weā€™ll also hear what theyā€™ve learned from becoming our leading fundraising teams and their advice for other families looking to get involved.

Learn more and support Georgeā€™s Suds Squad through their Power of 18 fundraising page here: https://secure.givelively.org/donate/chromosome-18-registry-and-research-society/2026-power-of-18-challenge/christina-kienstra

Today is the last day for our Fundraising Challenge! Together, we've more than exceeded our $40,000 fundraising goal! ...
08/18/2026

Today is the last day for our Fundraising Challenge!

Together, we've more than exceeded our $40,000 fundraising goal! šŸŽ‰

Thank you to all of our amazing teams, fundraisers, and donors! šŸ’œ

Let's keep pushing and make this the biggest Power of 18 Challenge yet!

Every team, every donation, and every action to build community and awareness makes a difference. Learn more and get started here: https://www.chromosome18.org/events/power-of-18/

Address

7155 Oakridge Drive
San Antonio, TX
78229

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Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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