August Updates From The Chromosome 18 Clinical Research Center

• Expert Videos Coming Soon! Have a question you've always wanted to ask a chromosome 18 expert? Get ready for a new series of expert videos! The Registry will be sitting down with Dr. Jannine Cody and CRC collaborators, including neurologist Dr. Karkar and biostatistician and web app creator Dr. Gelfond, to answer some of the questions families ask most about chromosome 18 conditions, research, health, and care.
• These short, informative videos will bring trusted expertise directly to families and make it easier than ever to learn from the incredible team of professionals working alongside the CRC.
• Be sure to subscribe to the Registry's YouTube channel so you'll be notified as soon as new videos are released: www.youtube.com/@Chromosome18Registry
• Celebrating an Incredible 2026 Family Conference! We had an amazing time welcoming our Chromosome 18 families back to San Antonio for the 2026 Annual Family Conference! It was wonderful to return to our home base and give families the opportunity to learn directly from so many of the outstanding medical and research professionals who collaborate with the CRC and Registry.
• A few highlights from this year's Conference:
  

-254 attendees

-23 expert speakers

-38 educational, support, and activity sessions

-8 families enrolled in the research study

-$22,000 raised through sponsored Starfish Dinner & Dance

tables

-$26,000 in research funding secured through Raise the Paddle

-A special $10,000 gift from Chromosome 18 Canada to support

research

• We are especially grateful to everyone who supported research during Conference. Together, our families, donors, researchers, and collaborators continue to move chromosome 18 research forward and help build a better future for children and adults with chromosome 18 conditions.
• And don't forget the photos! Check out photos from the 2026 Family Conference Facebook album HERE.

This month, Dr. Cody shares an article on research discoveries and answers the question as to whether eureka moments happen in chromosome 18 research. Please enjoy the article below:

Eureka!

We are often asked what is the most amazing thing we discovered. Wow. That makes it sound as it there was some sort of eureka moment when suddenly we discovered something no one else knew before. This is just not how science works. Even if you have a flash of insight, it then takes months or years to prove it to be accurate. In reality, science moves incrementally, building upon one small step after another, slowly evolving to new understanding. And when the goal is to make the chromsome18 conditions treatable, that goal is so massive a goal that it is sometimes hard to recognize progress. In reflecting on the big observations that we have learned over these last 30-plus years three things come to mind...Click HERE to read the full article.

If you would like to support the groundbreaking research projects underway at the Chromosome 18 Clinical Research Center, just click the button below:

To view Dr. Cody's chromosome 18 basics and FAQ videos, please click the link below:

Do you have questions about anything in this email? Contact the Clinical Research Center for more information at chromosome18@uthscsa.edu