Chromosome 18 March Happenings! |
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March 30th at 6:00PM CT: Self Advocate Karaoke Night. Click here to register.
April 18th at 6:00PM CT: Facebook Live. Live Q&A will follow presentation.
April 29th: Starfish Dash. Click here for virtual and in person registration.
May 9th at 3:00PM CT: New Member Call. click here to register.
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!
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Camp Registration is Now Open! |
Registration for Camp Chromosome 18 Annual Summit 2023 is now open! Camp will be in Columbus Ohio, July 9th-12th at the Nationwide Hotel. |
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Not in San Antonio, but still want to do the Starfish Dash? |
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Run your own Starfish Dash! |
Not in San Antonio? You can still participate in our annual Starfish Dash! After last year we decided to keep our Virtual Starfish Dash and engage our GLOBAL community. You can run/walk wherever you are; join us from a treadmill, your favorite running trail, a beach, or running around your neighborhood! Last year, we had over 6 countries partaking in this event, and we are excited to keep growing and raising awareness internationally. We are so excited to keep this option open, please make sure to send us pictures of you on your race day! |
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New Name, Same Great Experience!
Join Us For Camp Chromosome 18
Annual Family Summit 2023
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Rooms for Camp Chromosome 18 2023 in Columbus, OH, have sold out at the Nationwide Hotel. Don't worry, there are a few rooms reserved at the same Chromosome 18 group rate at a nearby hotel, the Hyatt Place Columbus/Worthington. Please call 1-800-993-4751 and use code G-C18C to book your room. We recommend booking ASAP as these rooms are expected to go quickly!
To book your room, please call 1-800-993-4751 and use Group Code G-C18C.
Registration Now Open!
Rooms are going quickly!
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Pennies for Perri Fundraiser |
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This month, The Poggio Family held their 1st Annual Pennies for Perri in California to support Chromosome 18 research. This event brought community together in honor of Jan and Jesse Poggio’s daughter, Perri. Perri is the light of their lives and was diagnosed with 18p-. She brings her family so much love and joy everyday.
The Poggio’s, partnered with Jersey Mike’s and they donated a full day’s sales amounting in $12,000 for Chromosome 18! The Poggio’s along with friends and family, raised another $8,000 totaling in a $20,000 donation to Chromosome 18 research through their event! They plan to hold this event annually.
Jan Poggio shared they had a goal of $2,500 and were blown away by how much they surpassed their goal. Check out Jan’s speech video about why they organized this event and how her daughter Perri inspired their family to put this meaningful event together.
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This month, the Registry gave $40,000 to the Chromosome 18 Clinical Research Center to continue the vital research that takes place everyday. These funds help support making sure our families get the continuing help that is so needed.
The NIH Kids First program R03 grant is funded and will receive $100,000/year for two years!
The NIH Gabriella Miller Kids First Pediatric Research Program (GMKF) sequencing data have been sent to the GMKF Data Resource Center at CHOP. We received access all these data on 2/16. Analysis is just beginning.
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Chromosome 18 Clinical Research Center |
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Whole Genome Analysis
This month, The Chromosome 18 Clinical Research Center is excited to share a new video from Dr. Cody! In this video (~14 minutes), Dr. Cody discusses Whole Genome Analysis, a test that assesses all chromosomes at once. Check out the video here!
This video is a great resource to share with family and friends who want to learn more about genome testing and how it's used to identify chromosome 18 abnormalities. Dr. Cody has also recorded a series of FAQ videos for anyone looking to learn more about chromosome 18 conditions in general.
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Champions for Charity - Valero Texas Open |
With your donations, you ensure that only research center in the world dedicated to the study of chromosome 18 conditions remains open and can continue helping over 6000 families improve the lives of their children and loved ones.
Scan the QR to learn more and donate!
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Thank you and Happy Birthday to Sydney Alper, Neale Parker, Laura Boyer, Hailey Sebastiani, Katrina Delaney, Jodi Hight, and Anastasia Sparling and everyone who celebrated their birthdays with Chromosome 18 through Facebook Fundraisers!
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Check out our February Facebook Live featuring Dr Karen to talk all about sleep! Dr. Karen's presentation is on Sleep: When Things Go Bump in the Night.
This is an official Fiesta Event and we would love to have you there!
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Welcome to the Chromosome 18 Family! |
Ma Akita San Andres, 18q-, Great Plains
Zainab Khan, 18q-, Southwest
Rebbecca Sutton, 18q-, South Central
Kathleen Burkhardt, 18q-, Rocky Mountains
Amanda Anderson, 18p-, Southeast
Ariana Dreher, 18p-, Southeast
Kelly Hensley, 18q-, Great Plains
Christina Pasculli, Tetrasomy 18p, Mid-Atlantic
Nancy Beason, South Central
Rachel Ellicott, 18p-, Mid-Atlantic
Hai Nguyen, Trisomy 18, Southwest
Kassi Keitan, Trisomy 18, Northeast
Wendy Grossman, 18q-, Mid-Atlantic
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Did you know Chromosome 18 has a 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.
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Upcoming Calendar Events
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The Chromosome 18 Registry & Research Society | www.chromosome18.org |
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