Events | Research Center | Starfish Dash

March 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 a part of the fun! Learn more on starting your own virtual Dash and print your race bibs here!

Register Today
Events

Chromosome 18 Clinical Research Center News!

February Check Presentation of $44,500

Improving treatments for the chromosome 18 conditions; IBD as an example

This month, Dr. Cody shares an article about improving treatments for the chromosome 18 conditions, and how surveys help the research team to understand the effectiveness of potential treatments.

Read the Full Article Here

Updates on the projects the Chromosome 18 Clinical Research Center:

  • If you are registered with the Clinical Research Center, be on the lookout for a short online survey asking about microphenotypes associated with a gene on 18p.

Conference Registration is Open!

Register Here

Registration today for the 2025 conference! 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. Americana Conference Resort Spa & Waterpark is open for booking, rooms are limited so book today!

Thank You Everyone for Hosting Regional Events!

Pennies for Perri


This month, Chromosome 18 saw it's largest regional fundraiser in C18 history with Pennies for Perri! Thank you Poggio Family and Jersey Mike's for raising over $116,000 to support our mission and families! View the event photos here.

Event Photos
Event Photos

Thank you everyone who came out to Starfish Camp! View the Starfish Camp photos here!

View Auctions Here
 

Rare Disease Day 2025

Thank you to Tom and Jen Kunkel for being a part of Rare Disease Day in Tuscon, AZ! They joined in at the Children's Museum for a fun day to raise awareness for Chromosome 18!

February Facebook Live

Every month on the 18th at 6PM CT C18 goes live! Click here to watch the Facebook live with self-advocate, Devon Lacey!


Welcome to the Chromosome 18 Family!


Destiny Dejesus, Tetrasomy 18p-, Southeast

Adam Imperato, 18p-, Rocky Mountains

Alaina Lloyd, 18p-, Great Lakes

Camila Franco, Tetrasomy 18p, Brazil

Christopher Good, Trisomy 18, Mid-Atlantic

David Smith, 18p-, Southeast

Farah Bouquelle, 18p-, Belgium

Fer Johnson, Trisomy 18, Northeast

Haidelen Lope 18q-, Virgin Gorda

Josh Murphy, Tetrasomy 18p, Rocky Mountains

Katie Shanahan, Trisomy 18, Southeast

Kaylee Hollinger, 18p-, Canada

Kristen Wozniak, 18p-, Great Lakes

Kristina Ramirez, Trisomy 18, Texas Area

Magdalena Hoerhager, 18q-, Austria

Mallory Hofacker, 18p-, Great Lakes

Nancy Moreno, 18q-, Texas Area

Nohemi Hernandez, 18q-, Texas Area

Norma Lennon, 18p-, Southeast

Thank you and Happy Birthday to Laura Boyer, Elizabeth Van Westen, and everyone who celebrated their birthdays with Chromosome 18 through Facebook Fundraisers! 

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