August Newsletter!

We are blown away! The Power of 18 Challenge raised over $50,000! Thank you to everyone who was a part of it, created a challenge and shared your 18 days with the Chromosome 18 community. It's not too late to donate or create a fundraising page HERE

Starfish Soiree and Golf Tournament are almost here!

Join Us for a Fun-Filled Day of Golfing – Supporting Chromosome 18 Families!

Tee off for a great cause! We invite you to a meaningful and memorable day at Canyon Springs Golf Club in San Antonio, where every swing supports children and families affected by Chromosome 18 conditions. Also included in your registration is a fun night at the Starfish Soiree that happens the night before the golf tournament.

Thank you Tremonte Family!

Thank you Kelly Tremonte, family and friends! Danny's Squad 4th Annual Event raised over $8,000 for Chromosome 18! Thank you to everyone who made this event possible and for joining in for Danny's Squad Gathering.

Chromosome 18 Illinois Family Gathering!

Last weekend, families in the Great Lakes and Great Plains region, got together for a picnic. Families had the chance to connect, catch up and share wonderful food. Thank you everyone who joined in on the fun afternoon. View photos here

Events

September 4: Spanish Speaking Family Connection Night on zoom

September 14: 3rd Annual Family Potluck at Pool Party in Napa, CA

September 18: Facebook Live

September 18: Pitt Hopkins Awareness Day

September 22: Parents with young children connection call

September 25: Tour & Talk Virtually with founder Dr. Cody at the Research Center

September 27: Pickleball Tournament in Denver, CO

October 9 & 10: Starfish Soiree and Annual Golf Tournament in San Antonio, TX

October 26: Cornhole Tournament in Dallas, TX

Every month, Chromosome 18 goes live on Facebook! Watch August's Facebook live with Camilla Downs, as she discusses how she uses the Clinical Dosage Map. WATCH HERE

Clinical Research Center

Thanks to the incredible fundraising efforts of our families, the Registry has had a very successful year so far. Because of this success, we were able to give an extra $90,000 to the Clinical Research Center in addition to the planned $44,500 for the month (for a total of $134,500), bringing the total annual amount given to the CRC to $316,000 so far in 2025! This year, the Registry has funded more vital research than ever before.

Every month, Dr. Cody writes a Clinical Research Center article. Read this month's Chromosome Abnormalities and Birth Defects here

Chromosome 18 in the Media: Melia Gorrell

During her Power of 18 Challenge, Gorrell ran a mile everyday for 18 days in order to raise both money and awareness for those diagnosed with Chromosome 18. Melia raised over $2,200 for Chromosome 18 research! Read the full article here

Chromosome 18 in the Media: New York Times: Noah is Still Here

Read the powerful story of Noah here