The Chromosome 18 Registry & Research Society

10/11/2026

Our October Facebook Live is one week away!!

Join us October 18th at 18:00 CT to hear from Camilla Downs, Chromosome 18’s 18p- Syndrome Coordinator, a Chromosome 18 parent, Family Navigator, and certified Special Needs Life Quality Coach.

Camilla will share practical guidance on finding local resources, building independence self advocacy, and preparing for the transition to adulthood. Whether transition is approaching or your family wants to start planning early, we would love for you to join the conversation.

📅 Sunday, October 18, 2026
⏰ 18:00–18:18 CT (6:00–6:18 p.m. CT)
📍 Live here on this page!

Can’t make it live? Watch the recording afterward on our page or through the link in our monthly e-newsletter.

10/11/2026

10/10/2026

🌟 2026 Member Survey Series 🌟

You shared your experiences, and we’re sharing the results!

Our Member Survey Results series continues with some key findings from your feedback.

Thank you to the incredible 408 respondents who made our 2026 Member Survey participation record breaking. Your feedback helps us better understand our Chromosome 18 families’ needs.

10/07/2026

San Antonio families and friends, join us for Starfish Bags & Boards, an afternoon of co****le, pickleball, and support for Chromosome 18!
Players of all ages and skill levels are welcome. One registration includes both the co****le social and pickleball clinic, and non-players can attend for free. A percentage of the proceeds will benefit the Chromosome 18 Registry & Research Society, supporting research, education, and support for individuals and families affected by chromosome 18 conditions.
📅 Sunday, November 1, 2026
⏰ 1:00 to 4:00 PM CT
📍 Chicken N Pickle San Antonio:5215 UTSA Blvd., San Antonio, TX 78249
Schedule:
• 1:00 to 3:00 PM: Co****le Social
• 3:00 to 4:00 PM: Pickleball Clinic & Social
Registration:
• $40 for one player
• $80 for a team of two
• Free for non-players

Learn more and register here: https://www.chromosome18.org/event/starfish-bags-boards/

We can't wait to see you there!!

10/07/2026

Why are seizures common in chromosome 18 conditions?

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

In this video, Dr. Karkar, Medical Director and Clinical Associate Professor of Neurology at the Chromosome 18 Clinical Research Center, explains that chromosome 18 contains many genes whose protein products are important for brain development. Changes in the production of these proteins may disrupt brain networks and affect the balance between excitation and inhibition, potentially lowering the threshold for seizures.

Please share this answer with a family member, caregiver, or provider who may benefit.

Tune in next Tuesday to learn more about neurological development, and hear about what causes epilepsy in chromosome 18 conditions.

10/04/2026

Families new to Chromosome 18, we invite you for an opportunity to connect and meet other parents at our next New Member Zoom Call today next month on Tuesday, November 3rd, 2026 at 7:00pm Central Time (US).

This is a great way to meet several key people in our organization, learn more about Chromosome 18, ask questions and feel connected right away.

Register here: https://www.chromosome18.org/event/newfamily/

10/03/2026

🌟 2026 Member Survey Series 🌟

You shared your experiences, and we’re sharing the results!

Thank you to the incredible 408 respondents who made our 2026 Member Survey participation record breaking. Your feedback helps us better understand our Chromosome 18 families’ needs.

Our Member Survey Results series starts with resources mentioned in the survey, gathered in this graphic for you to explore.

Access the clickable graphic here and visit a link to each resource: https://canva.link/55v6dw4hh096ut4

10/02/2026

We have some exciting news to share!