Chromosome 18

October Newsletter

World Chromosome 18 Day is just around the corner! Join us Sunday, November 15th for this FREE, all-day virtual event.

This is a special opportunity to hear directly from leading chromosome 18 experts, with sessions like Dr. Jannine Cody’s Research Updates & Q&A, Dr. Jon Gelfond on Epidemiology & Biostatistics, Dr. Dan Hale on Endocrinology, and Dr. John Carey’s Trisomy 18 presentation. Between educational sessions, connect with other families through regional gatherings and syndrome breakout sessions, plus an all-ages sibling activity and a special self-advocate connection event!

Explore the tentative schedule and plan your day with us! There is something for everyone!

Upcoming Events

October Facebook Live - If you missed our October 18th Facebook live, you can still hear from Camilla Downs, our 18p- Syndrome Coordinator, Chromosome 18 parent, Family Navigator, and certified Special Needs Life Quality Coach, by watching the recording back here!

Family Costume Dance Party - Put on your costumes and bring your dance moves on October 28th at 7pm CT for our virtual Family Costume Dance Party via Zoom! *Please note this event has been rescheduled from October 29th.*

POSTPONED: Starfish Bags & Boards - Our Starfish Bags & Boards Cornhole & Pickleball Social, originally scheduled for Sunday, November 1st, has been rescheduled to Sunday, May 23rd, 2027 2-5pm CT. We’re sorry for any inconvenience, and we’ll share the new registration details in a future newsletter!

New Family Resource & Intro Zoom Call - We invite our new Chromosome 18 members to join us on Zoom November 3rd 4pm – 5pm CT! This is a great way to meet several key people in our organization, learn more about Chromosome 18, discover how to navigate our resources and support networks, ask questions, and feel connected right away.

World Chromosome 18 Day - Join Chromosome 18 families from around the World on Zoom November 15th! This free, virtual event is a chance to come together with our global chromosome 18 families to learn, connect, and have fun! This will be the 4th Annual World C18 Day and we’re so excited to announce this year's schedule soon!

November Facebook Live - Tune in live to our Facebook page at 6pm CT on November 18th to hear from David and Jennifer Knox, Chromosome 18 parents who partner with MakeGood Inc. to build free-of-charge, custom 3D-printed mobility trainers for children with mobility challenges.

EVENTS CALENDAR

POSTPONED: Starfish Bags & Boards

Our Starfish Bags & Boards Cornhole & Pickleball Social, originally scheduled for Sunday, November 1, has been postponed. We’re sorry for any inconvenience this change may cause and appreciate your understanding.

Starfish Bags & Boards will now take place on Sunday, May 23rd, 2027 from 2:00-5:00pm CT. We will post details in our next e-newsletter, on our events calendar, and Facebook soon.

We look forward to getting together with your family for some cornhole and pickleball in May!

Clinical Research Center

This month, the Clinical Research Center shares an article

investigating how many people in the U.S. could actually be affected by a chromosome 18 condition.

READ HERE

Chromosome 18 Answers Video Series

The new Chromosome 18 Answers video series is out now! Have a question you've always wanted to ask a chromosome 18 expert? We have a new series of short-form videos with researchers and collaborators at the Clinical Research Center, including exclusive answers from Dr. Cody, Dr. Karkar, and Dr. Gelfond. Check out the series on Instagram reels, Youtube shorts, or Facebook reels! New videos every Tuesday!

Click to hear Dr. Karkar answer: "What causes epilepsy in chromosome 18 conditions?"

Click to hear Dr. Gelfond answer: "What does a biostatistician do?"

22nd Annual Golf Tournament

Our 22nd Annual Chromosome 18 Golf Tournament and Starfish Soirée was a huge success! Together, we raised $95,000 for Chromosome 18 families! Thank you to everybody that participated, volunteered, donated, or got involved to help make this event a success!

A special thanks to:

The Golf Tournament Chairs, Claudia & Jim Traa
The Starfish Soireé Co-Chairs, Claudia Traa & Lisa Gurwitz
All of our sponsors! View the program and sponsor list here.

GOLF PHOTO ALBUM

SOIREE PHOTO ALBUM

Bags, Boards, & Brews: Cornhole Tournament in Grapevine, TX

Thank you to everyone who was part of our Bags, Boards, & Brews Cornhole Tournament in Grapevine, TX! Because of you, we raised over $10,000 for Chromosome 18 education, support, and research!

A very special thank-you to Jodi and the Hight Family for organizing and hosting this incredible day and thanks to Annemarie Weatherhead and family for supporting the event. Your dedication and passion continue to make a difference for our Chromosome 18 community.

PHOTO ALBUM

Board Nominations

Would you like to volunteer on the Board to help steer the growth of Chromosome 18? Do you have passion, dedication and want to work with a great team to guide the direction of Chromosome 18?

Director at Large positions are open for nominations or self-nominations to serve terms beginning on January 1, 2027.