Chromosome 18

July Newsletter

Power of 18 Begins August 1st

Power of 18 starts August 1st!

Now is your chance to do your part to support vital Chromosome 18 research and have fun at the same time!

Join us from anywhere in the world and let’s take on the 18-day challenge to raise $40,000 together!

What challenge can you do? Anything you'd like! The choices are endless! Get ready to start your challenge!

Thank You for Making Our 2026 Annual Family Conference a Huge Success!

We celebrated the return of our beloved Chromosome 18 Annual Family Conference in the epicenter of all things Chromosome 18 – San Antonio, TX!

Thank you to everyone who helped and spent countless hours before, during, and after to make these three fun-filled days of support, education, and research happen. An event of this magnitude is simply not possible without our wonderful volunteers and our amazing Conference committee and co-chairs, Claudia Traa and Ashley George.

PHOTO ALBUM

Do you have pictures/videos from Conference you'd like added to this public photo album or in our other official medias? Please email them to programs@chromosome18.org!

Posting on your own social media? Tag @chromosome18Registry on Facebook and @chromosome18reg on Instagram. And use #C18Conference26 and #Chromosome18 so we can cheer you on!

Upcoming Events

July Facebook Live - If you missed the Chromosome 18 staff live on Facebook July 18th at 6pm CT as they re-capped the 2026 Annual Family Conference, you can watch it back here!

Self-Advocate Game Night: Among Us - Join us for a self-advocate night to play Among Us! Join in on Wednesday, August 5th at 6:00pm CT over Zoom.

Danny's Squad 5th Annual Fundraiser - Mid-Atlantic Families, you're invited to Danny’s Squad 5th Annual Fundraiser on August 8th at 1:00pm ET in Broomall, PA!

New Family Resource & Intro Zoom Call - We invite our families new to Chromosome 18 to join us for an opportunity to learn more about C18, connect with our resources, and meet other members via Zoom on August 12th at 7pm CT.

Great Plains Picnic in the Park - Great Plains and surrounding families, join other Chromosome 18 families for a summer picnic in Des Plaines, Illinois 12 – 4 pm on August 23rd!

Northern California Potluck & Pool Party - California families, you're invited for a summer pool party and pot luck in Napa, CA 11am - 1pm PT on Sunday, August 23rd!

Spanish-Speaking Parent/Caregiver Support Call - Join other Spanish-speaking families affected by chromosome 18 for a Zoom meeting on September 10th at 7 pm CT.

Shane's Scramble Utah Golf Tournament - Join us on September 22nd beginning at 8am at TalonsCove Golf Club in Saratoga Springs, Utah for a memorable day of golf, great food, and community impact.

EVENTS CALENDAR

Chromosome 18 Golf Tournament

Save the date! More details about our 22nd Annual Chromosome 18 Starfish Soirée (October 8th) and Golf Tournament (October 9th) will be announced soon!

Clinical Research Center

This month, the Clinical Research Center (CRC) enrolled an incredible total of eight new families in the Clinical Research Study while at Conference in San Antonio, TX. CRC staff also conducted vital blood draws, presented in Conference sessions, and served as a crucial resource to attending families.

Welcome the new Clinical Research Center Patient Coordinator, Lacey!

Please welcome Lacey McClure as the Clinical Research Center's new Patient Coordinator! Lacey started at the C18 CRC in July and some of you got to meet her in person at the Conference. Read more about Lacey here.

Welcome our new 18q- Coordinators!

Kristen's Bio

Maggie's Bio

Please welcome Kristen Yerys and Maggie Beason as our new 18q- Co-Coordinators! Thank you, Kristen and Maggie, for joining the Coordinator Team!

In the Media

Check out this article about charitable contribution rule changes by our accountants, Schuh Browne, and learn how charitable contributions are making a comeback in 2026. Read it now here.

New Resource Videos on Our Blog

New video resources on post-high school transition and independent living are available now on our blog! Check them with all of our other great blog articles here.

Thank you to Taylor, Charles, and Leslie for these amazing presentations and valuable new blog resource videos!

"Choose Kindness" Shirt Fundraiser Ends Aug. 2!

The "Choose Kindness" shirt fundraiser is back! Each shirt is $18 each, and a percentage of the sale benefits the Chromosome 18 Registry & Research Society.

These shirts include chromosome 18 on the "i" in "kindness" and the Chromosome 18 logo on the back. A great message for a great cause that also spreads awareness! Choose from tons of colors in adult and youth sizes! Get yours before the store closes on August 2nd! Shipping within the US only.

Thank you to Katie Bailey, our incredible Rocky Mountains Coordinator, for holding this fundraiser.

ORDER HERE

Welcome to the Chromosome 18 Family!

Julia Lauro, 18q-, Rocky Mountains

AnneBöhme-Kappaun, 18q-, Germany

Randalyn Huyck, 18p-, Texas Area

João Fonseca, 18q-, Portugal

Qumars Sadrizada, 18p-, Iran

Jihyun Kim, Tetrasomy 18p, Korea

Winko An, 18q-, Northeast

Takeshi Matsufuji, Tetrasomy 18p, Japan

Julianna Emilia Fernandez, 18p-. Argentina

Nathalie Kanaan, 18p-, France

Adele Price, 18p-, United Kingdom

Tasha Lucas, Trisomy 18, Southeast

Muhammad Hussam Khaliq, 18p-, Netherlands