Chromosome 18 November Happenings
Register here: bit.ly/c18upcomingevents
December 4th: Global Chromosome 18 Day on Zoom, U.S. kickoff at 11:00am CT. Click here to register!

December 4th: Phantom Tea & Wine kickoff. Click here to set up your fundraising page.

December 11th: Storytime & Pictures with Santa 3:00pm - 4:00pm CT. Click here to register!

December 15th: Chromosome 18 Clinical Research Center Tour at 11:30am CT. Click here to register!

December 18th: Facebook Live at 6pm CT!

When you have a few minutes, please check out our Instagram Page! We post regular reels and pictures of our families and events, it's a great way to stay up-to-date with what's going on at Chromosome 18!
Happening this Month
Join us this Sunday December 4th, 2022 on Zoom for World Chromosome 18 Day! This free, virtual event is a chance to come together with our global chromosome 18 family to learn, connect, and have fun! Registration is required for the event, and you can view the schedule by clicking the link below.

Some event highlights include:
  • FREE to all members
  • Educational speaker and research updates
  • Syndrome breakouts
  • Q&A with Dr. Cody
  • Self-advocate Show & Tell
  • Holiday dance party! 

Some Important times to note for our international members:

Australasian Connection Time - Sunday December 4th, 12:00pm - 1:00PM AEDT

European Connection Time - Sunday December 4th, 3:00pm - 4:00pm GMT

Canadian Connection Time - Sunday December 4th, 11:00am - 12:00pm EST

U.S. kickoff - Sunday December 4th, 11:00am CST

We can't wait to see you there! 


Thank you to the Gordon Hartman Foundation for your generous sponsorship of the first year of this special event.
Morgan's Wonderland Hearts of Gold Award
Congratulations Dr. Cody!

Congratulations to our President & Founder Dr. Jannine Cody, who won the Morgan's Wonderland Hearts of Gold Wall of Fame award this month.

The award recognizes individuals in San Antonio who have dedicated their lives to those with disabilities and special needs. Dr. Cody was honored for her over 30 years of work to improve the lives of children, individuals, and their families affected by chromosome 18 conditions. She was presented with the award by Gordon Hartman, the founder of Morgan's Wonderland.

It was a very special evening for Registry staff and loved ones, who were there to celebrate and enjoy the park after hours. Thank you to Morgan's Wonderland and Gordon Hartman for this special honor!
Chromosome 18 Clinical Research Center
What if we had all the funding we needed?

This month, Dr. Cody shares her thoughts on what would happen if the Chromosome 18 Clinical Research Center had all the funding it needed:

I am often asked this question and I presume when people ask, they expect the answer will yield the single most important thing that we need to do. However, our mandate at the Clinical Research Center involves five different chromosome 18 conditions that encompass 263 genes. Therefore, the answer is not as simple as it would be for a single condition caused by a single gene. Multiple multi-gene conditions require multiple parallel strategies...
San Antonio Area Families: Emergency Need Fund
Chromosome 18 has received a special grant from the Najim Charitable Foundation to assist low-income families acquire medical necessary items for their chromosome 18 affected child.

This fund is the first time ever we've been able to offer a program like this. Funding will cover the cost of medical items (up to $2,000 per family) for chromosome 18 families in the San Antonio area.

Please reach out to office@chromosome18.org with questions.
Thank you and Happy Birthday to Kelly Collins, Bea Powell, Rebecca Romo Teague, and everyone who celebrated their birthdays with Chromosome 18 through Facebook Fundraisers! 
November Monthly Highlight
Upcoming & Past Events
Check out our October Facebook Live featuring chromosome 18 parents Katie Bailey and Tam Aldrup. Katie and Tam discuss Phantom Tea & Wine, how it works, and memories from some of their favorite Phantom tea & Wine parties. If you've been thinking about joining the research study but are unsure how to get started, be sure to check out the recording on our Facebook page!

This month, the Robold family in Tucson, AZ hosted a Starfish Scramble event at Topgolf! The Scramble had over 60 participants and raised almost $7500 for chromosome 18 research! Special thanks to our wonderful organizer, Jessica Robold and her family for hosting. Also a special thank you to the Lamont and Baker families for joining us for this special day!

Are you interested in hosting a Scramble or other fundraiser in your area? Email us at office@chromosome18.org, we'd love to discuss some ideas!
Welcome to the Chromosome 18 Family!
Day Family, 18q-, Southwest Region
Tozetto Vettorazzi Family, 18q-, Brazil
Ghunney Family, Trisomy 18, Northeast Region
Thoennes Family, 18q-, Rocky Mountain Region
Manuel Family, Tetrasomy 18p, Australia
Reve Family, Ring 18, France
Romaezi Family, 18p-, Mid-Atlantic Region
Dias Family, Tetrasomy 18p, Brazil
Kontakinou Family, 18q-, Greece
Delaney (Katrina) & Tomey (Steven) Family, 18p-, Northeast Region
Donahue Family, 18q-, Southeast Region
O'Brien Family, 18q-,, Northeast Region
Scott Family, Tetrasomy 18p, England
Delaney (Johanna) Family, 18p-, Northeast Region
Leland Family, 18q-, Northeast Region
Coker Family, 18q-, Southeast Region
Suttles Family, Pitt Hopkins, South Central Region
Kuykendall Family, 18q-, Southeast Region
Pietri Family, Ring 18, France
Did you know Chromosome 18 has a weekly blog? You can get the inside scoop from research updates, to stories from our families, the blog is another way to stay connected to our virtual community. You can find it here.
Upcoming Calendar Events

December 4, 2022 - World Chromosome 18 Day (virtual)

December 4, 2022 - Phantom Tea & Wine Kickoff

December 11, 2022 - Storytime and Pictures with Santa (virtual)

December 15, 2022 - Clinical Research Center Tour (virtual)

December 18, 2022 - Facebook Live featuring staff year recap
 
Planning an event? Contact office@chromosome18.org to have the event listed in our newsletter and on our website!
The Chromosome 18 Registry & Research Society | www.chromosome18.org