Chromosome 18 July Happenings |
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Syndrome Support Groups will be meeting in August!
August 18th: Facebook Live featuring Self-Advocate, Devon Lacey at 6pm CT!
When you have a few minutes, please check out our newest video resource "Meet Our Families" featuring video stories from our Chromosome 18 families as they share more about their lives and their Chromosome 18 journeys!
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Thank you for making the 27th Annual Family Conference a huge success! |
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Thank you to everyone who helped make this conference happen! We had a blast, learned from speakers and peers, made new friends and reconnected after 3 years!
A conference of this magnitude is simply not possible without volunteers. Thank you to all the volunteers who spent countless hours before, during and after the conference to make sure our families had a great conference experience!
We had 239 participants from the US, Canada, Austria, and Scotland! 45 attendees were first timers. Click here to see the Conference Wrap-Up Statistics.
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Thanks to everyone for providing pictures for our Facebook page. A special thanks to Rick Guidotti for the professional pictures of our beautiful families!
To open the Positive Exposure Gallery the password is: amazing
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Chromosome 18 Clinical Research Center |
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Why Can't You Just Put Back the Missing Piece of the Chromosome?
I am often asked why we just can’t use gene therapy and put back that missing piece of chromosome or take out that extra chromosome. Currently that idea is technically impossible because of the sheer size of even the short arm of chromosome 18. Chromosome 18p is 3000 times too big to be packaged into the commonly used viral vectors for gene therapy. However, I hate to say that such an approach is impossible because science is all about making the impossible possible. So instead of saying it is impossible I would rather say it is impractical. It is impractical, less because the technology does not exist to accomplish it but more because there are so much easier more currently feasible approaches to making the chromosome 18 conditions treatable.
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Bexar County Families: Emergency Need Fund |
We are excited to announce Chromosome 18 has received a $10,000 grant 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. This will provide medical items (up to $2,000 per family) for special needs children that our chromosome 18 families in Bexar County and surrounding areas desperately need but cannot afford.
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18th Annual Golf Tournament! |
Chromosome 18 is excited to announce this year will be the 18th Anniversary of our Annual Golf Tournament! Join us on October 7th, 2022 for a fun-filled day of celebration for our 18th year of golfing in support of our chromosome 18 children and families.
Play 18 holes at the beautiful Quarry Golf Course in San Antonio, TX while raising money to help children and adults with chromosome 18 abnormalities live healthy, productive lives.
Click here to see photos from last years' event!
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Thank you and Happy Birthday to Tara-Ann Ross, Marianna Kuortti, Stephanie Jackson, Joe Verstreater, Liz Woodfield, Angela Ashley, Kirstie Ann Burrows, Yvonne Marie, Rachel Sibert and everyone who celebrated their birthdays with Chromosome 18 through Facebook Fundraisers!
Thank you Grace McKee, Wendy Waugh, and Bea Powell for your Facebook Fundraisers!
Thank you to all our amazing volunteers and donors for Conference. Thank you Amy Hadley & Ferguson, Troy Turner & Dan Deipenhorst with Legacy Mutual, Rick Guidotti, Jeff Earl, Dave & Tam Aldrup, Alexis Parsons, Cynthia Parsons, and Helene, Alex Hollingsworth, Cooper Armstrong, our awesome Conference Committee, the Turner Family, the fabulous Marriott staff, Heroes & Villians cosplayers, Kate & Rob Chaney, Mark Sogard for DJing at Conference, Elizabeth Shaffer, Catherine Larson, and William Guthrie.
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July New Member Highlight |
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Click here to see an ABC News story about Remote Controlled Lawn Mowers that benefit Chromosome 18.
Click here to see photos from the Canadian Conference.
Click here to see a photo from the in-person Chromosome 18 Clinical Research Center Tour.
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Pictured above from left to right: Jessie Moore, Cooper Armstrong, Amelie Simons, & Cynthia Parsons |
Pictured above: Jessie Moore, CEO Neale Parker, TG Manuagwu, Chris Matz, Dejan Jurisic, & Jenevy Sims |
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Welcome to the Chromosome 18 Family! |
White Family, Great Britain
Kempf Family, Southeast
Garcia Family, 18p-, Venezuela
Vander Wielen Family, Trisomy 18, Great Plains
Williams Family, England
Joseph-Chesney Family, Northeast
Overland Family, South Central
Broderick Family, Great Lakes
Howerton Family, Mid-Atlantic
Brooker Family, Australia
Nickel Family, Saudi Arabia
Luarca Family, South Central
Francois Family, Southeast
Scuderi Family, Texas Area
Grimm Family, Great Plains
Powell Family, Texas Area
Wilson Family, 18q-, Southeast
Tracey Family, Australia
Martin Family, Great Lakes
Serra Family,Brazil
Doyle Family, Mid-Atlantic
Tavares Family, Ring 18, Brazil
Anthoine-Milhommes Family, Ring 18, France
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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. You can find it here.
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Upcoming Calendar Events
October 23, 2022 - Starfish Dash in Fort Worth
December 4, 2022 - Chromosome 18 Day! (more info TBA)
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The Chromosome 18 Registry & Research Society | www.chromosome18.org |
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