Events | Research Center | Starfish Dash

February Newsletter!

Starfish Dash 5K

The Chromosome 18 Registry & Research Society is proud to present the Annual 5K Starfish Dash Run/Walk & Health Fair for the 8th year in San Antonio, TX!

Not in San Antonio? You can still be apart of the fun! Learn more on starting your own virtual Dash and print your race bibs here!

Events

Chromosome 18 Clinical Research Center News!

Pictured above are 3 of the Chromosome 18 Clinical Research Center staff and from left to right: Aamuktha Pentala (Research Associate), Brittany Antopia (Program Data Manager), and Catherine McCarthy Participant Coordinator). You can view the rest of the team here.

New 18p Data

This month, Dr. Cody discusses a paper that was just published describing adult triplets in Denmark with an interstitial deletion of 18p.

Read the Full Article Here

Updates on the projects the Chromosome 18 Clinical Research Center:

18p- videos for speech and muscle changes are continuing to be recorded by families and evaluated by Drs. Karkar, Tawil (neurology) and Lu (speech).
The seizure survey sent to 596 participants with 333 responses. Data are being analyzed.

Conference Registration is Open!

Registration for Conference

Registration for the 2025 Conference is now open! The 2025 conference will be held at Americana Conference Resort Spa & Waterpark from Sunday July 13th (check-in) - Wednesday July 16th (the Starfish Dinner & Dance) in Niagara Falls, Canada.

Chromosome 18 is offering a discounted ticket for first time attendees of $100 USD/$145 CAD per person. To learn more about attending click here for more details. Still have questions? You can access our FAQ's here.

Hotel Booking

2025 Chromosome 18 Annual Family Conference Hotel Rooms are now available! The conference will be held at the Americana Conference Resort Spa & Waterpark. You can book online or by phone.

Online Reservations Code: 101530. The code will be entered under the Group ID box.
Call in/Phone Reservations Code: Chromosome 18 Canada

Book Your Room

Thank you Holder Family, friends, volunteers & sponsors for making Carter's Cornhole Tournament such a success and raising $55,000 to support Chromosome 18 families! Check out the photos here.

Rare Disease Day 2025

Rare Disease Day is on February 28th! Stay tuned for a short Facebook video from The Chromosome 18 staff. Learn more about Rare Disease Day Events near you here!

February Facebook Live

Every month on the 18th at 6PM CT C18 goes live! Click here to watch the Facebook live with Tony Haney, as he shares more about conference in Niagara Falls, Canada!

Welcome to the Chromosome 18 Family!

Phoebe Belford, Tetrasomy 18p, Southeast

Liron Cohen, 18q-, Israel

Monica Martine, 18p-, Mexico

Samantha Lopez, 18p-, West

Zoe Simons, 18q-, Australia

Ruth Baxter, 18q-, United Kingdom

Fathi Shaaban, Ring 18, Canada

Grissel Sanchez, 18q-, South Central

Eva Ringgaard, Tetrasomy 18p, Sweden

Helene Le Teno, 18q-, France

Seyun Jang, Tetrasomy 18p, Germany

Connor Percival, 18q-, United Kingdom

Sarah Wild, 18q-, Great Lakes

Karlee Porter, Ring 18, Rocky Mountains

Claire Williamson, 18p-, Great Plains

Emily Marks-Parsons, 18q-, United Kingdom

Milica Djordjevic, Ring 18, Serbia

Destiny Dejesus, Tetrasomy 18p, Southeast

Thank you and Happy Birthday to Estee Nelson, Lindy Haynes, and everyone who celebrated their birthdays with Chromosome 18 through Facebook Fundraisers!

210-657-4968

office@chromosome18.org