Chromosome 18 April Happenings |
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May18th - Facebook Live at 6pm CT. Conference Co-Chairs, Dave & Tam Aldrup will share exciting news about conference!
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Many families say that attending the conference is a "life changing experience," and whether it is your first or twentieth time, we can't wait to see you there!
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The Starfish Dinner & Dance is the last night of the conference Saturday, July 9th. Join us for our reception, celebration dinner, all-out dance party, and silent auction.
Raise or sponsor at least $1,500, and you’ll be able to pick your choice of table (that seats 10 people) in the ballroom for the Starfish Dinner & Dance! With family table sponsorship, you choose how you would like to be recognized by selecting your table name along with reserved seating. If you would like to reserve a Family Table for up to 10 people, please click here.
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May Syndrome Support Groups Schedule |
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We started our new Syndrome Support Groups in March and they were a hit! We are so glad people enjoyed getting together to ask questions, share their own experiences, and be part of a community of other chromosome 18 parents and caregivers.
Our Syndrome Support Groups will meet every other month in 2022 (May, July, September, November).
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Thank you to everyone who made it out to the Starfish Dash IN-PERSON & VIRTUALLY on Saturday, April 9th. We appreciate all of the participants, volunteers, sponsors, and supporters who helped make this event possible!
Click here to see all the fun pictures from the event.
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Great Plains & Great Lakes Families - There is still time to register for the Naperville Starfish Scramble coming up THIS SUNDAY, May 1st from 2-5pm. Join us for 3 hours of playtime, food, auction, and more!
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2022 Starfish Gala in Nebraska |
Thank you to Erica Johnson and everyone who supported the 2022 Starfish Gala! Over $7,000 was raised to help fund Chromosome 18 research. |
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Chromosome 18 Clinical Research Center |
What Do We Know About 18p- and Dystonia?
This month Dr. Cody shares an article on 18p- and dystonia (muscle cramping), and discusses the research at the CRC covering this topic.
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Thank you for completing our 2021 Member Health Survey! Here are the results... |
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Thank you for taking the time to complete our 2021 Member Health Survey. We had 170 people complete the survey. Your responses help us understand the needs of our members' better.
Congratulations to Jennifer Underhill! You are the winner of the $100 Amazon Gift Card.
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Thank you and Happy Birthday to Sydney Alper, MaisaRa Haque-Wahidi, Laura Petry Boyer, Anne Weasley, Brandie Hall, Laurel Anna Sheppard, Tam & David Aldrup, Renee Cozzolino, Brian David, John Curtain, Jennifer Heggie Kunkel, & Kristen Schmick Earl for celebrating their birthdays with Chromosome 18 through Facebook Fundraisers!
Thank you to Bryan Cook, Joel Wolf, Amanda Healey, June Jamieson, and Judy Heggie, for your very generous donations!
Thank you Jeff Borello for the Soaring Eagle Sponsorship for the Naperville Scramble and to Erica & Mike Johnson for raising over $7,000 from Starfish Gala in honor of Lathan Johnson!
Thank you Mike Regina for your donation in Memory of Caroline Dunham.
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April New Member Highlight |
Our April New Family Highlight is Alex Savage, 18q- (age 18) and his mom June Jamieson all the way in Scotland. The picture on the left is from our 2022 Virtual Starfish Dash and the picture on the right is Alex's first day of college. |
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Click here to see pictures from the 5th Annual Starfish Dash!
Click here to see our April Facebook Live with Dr. Cody!
Click here to watch the video from our Member Zoom Event on GI Issues with Erica Annotti, MSN, RN, CPNP-PC.
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Houston Starfish Scramble on May 22, 2022! |
Texas Area Families - There is still time to register for the Houston Starfish Scramble coming up on Sunday, May 22nd from 2-5pm. Join us for 3 hours of playtime, food, auction, fun, and more!
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Did you know Chromosome 18 has a new 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.
Check out our blog here every Monday:
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Welcome to the Chromosome 18 Family! |
Drouin Family, Trisomy 18, Southeast
HongXiang Family, 18q-, China
Castro Family, 18p-, Southeast
Petaccio Family, Southeast
Koch Family, Tetrasomy 18p, Germany
Bedford Family, Mid-Atlantic
Vega Family, Tetrasomy 18p, Southwest
Carmody Family, 18q-, Ireland
Main Family, Trisomy 18, Southwest
Pottinger Family, Great Plains
Wright Family, Ring 18, UK
Katz Family, 18q-, Southwest
Simms Family, Trisomy 18, Mid-Atlantic
Hansen Family, Trisomy 18, Northwest
Foutch Family, 18q-, Northwest
Hatton Family, Southeast
Kazimov Family, 18p-, Azerbaijan
Auletta Family, 18p-, Southeast
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Upcoming Calendar Events
October 23, 2022 - Starfish Dash in Fort Worth
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The Chromosome 18 Registry & Research Society | www.chromosome18.org |
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