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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - March News
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Chromosome 18 Merchandise Shop Opening Soon
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Very soon we will be opening a Shopping Cart feature on our website, allowing you to shop live at chromosome18.org. Here you can purchase Chromosome 18 shirts, hats, bags, cookbooks and so much more.
Shop with heart - All sale proceeds benefit Chromosome 18 to help continue vital research and family support.
Keep a look out for a separate email with specific Grand Opening dates where you can save up to 25% OFF during the first 18 days the Shopping Cart is LIVE! |
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Chromosome 18 Clinical Research Center
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If you are thinking about coming to the 2018 Chromosome 18 Decoded Family Conference in Baltimore, the Chromosome 18 Clinical Research Center will be offering several research projects to research participants. There will be NO blood draws to enroll new participants at this conference.
The first activity is a video recording of participants' faces as they perform tasks such as smiling, puckering their lips, and reciting some words. These recordings will be analyzed for neuromuscular changes and speech quality. Participants must be over the age of eight who have an 18p or 18q deletion. |
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The first activity is a video recording of participants' faces as they perform tasks such as smiling, puckering their lips, and reciting some words. These recordings will be analyzed for neuromuscular changes and speech quality.
Participants must be over the age of eight who have an 18p or 18q deletion.
The second activity will be a short developmental evaluation that measures executive function skills and a second that measures finger-tapping speed.
This activity is open to study participants over the age of 18 who can identify and verbally read names of colors.
Study participants can schedule either or both of these assessments for anytime on
Sunday, July 1 or throughout the conference.
It is best to schedule an appointment in advance. For more information or to schedule an appointment email
Annice Hill at
hilla3@uthscsa.edu.
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If you missed our Chromosome 18 Live Facebook Event: 18 Chromosome Facts and Why They Matter presented by Courtney Sebold, Chromosome 18 Clinical Research Center's Genetic Counselor, you can view it here.
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Be sure to tune in to the
April Facebook Live Event, April 18th at 1800 (6:00 p.m. CST), where Self- Advocate,
Becky Hunt will hosting.
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Chromosome 18 Starfish Dash - Official Fiesta Event
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An amazing time is upon us again this year with the upcoming Chromosome 18 Starfish Dash - an Official Fiesta event - a FREE 5K Run / Walk at the UT Health campus on Saturday, April 28th. This event promotes health and fitness, family and community togetherness and raises funds and awareness for Chromosome 18.
Registration is required and there is NO FEE to participate; however, fundraising is vital to making our event a success and ensuring our leading global research center thrives and we continue to offer support for families & physicians of children with chromosome 18 abnormalities. All individuals that reach a fundraising minimum of $25 will receive a Starfish Dash Fiesta medal and participants that reach or exceed $50 in funds raised will receive a Chromosome 18 Starfish Dash t-shirt AND a Starfish Dash Fiesta medal (while supplies last)
You don't have to live in the San Antonio area to participate! Virtual (spirit runners) are not just accepted - they're encouraged! So register yourself today or build a team and participate together with your friends, family and colleagues.
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Chromosome 18 Starfish Scramble San Antonio
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Join us at the Chromosome 18 Starfish Scramble San Antonio. This wonderful event will be held Friday, April 27th from 6:00 p.m. to 9:00 p.m at Topgolf San Antonio.
Three hours of Topgolf play, giveaways and more are included with your registration.
Ross Traa (pictured left) is our honoree for this event as well as the Chromosome 18 Starfish Dash. Learn more about this outstanding young man and his amazing journey and triumphs here. For more event details and to register, click below. |
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Help Us Receive Our $25,000 Matching Donation
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Birdies for Charity, through the
Valero Texas Open, is one of
our biggest fundraisers of the year!
Chromosome 18 receives
100% of every penny raised by you and will receive a
7% matching gift from the Valero Texas Open. For more information about Birdies for Charity's impact on Chromosome 18, click
here.
We need your help this year to receive our matching gift of $25,000!
As of today, we have raised $11,000, and we are $14,000 short of our goal. With your help, we can raise up to $50,000 with our matching gift. Consider giving a pledge or a one-time gift today!
All donations must be received by Birdies for Charity no later than April 16, 2018.
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2018 Chromosome 18 Decoded:
25th Annual Family Conference - Book Now
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New name - nothing's changed! We're celebrating the 25th Anniversary of the Chromosome 18 Annual Conference this year under the new name - Chromosome 18 Decoded. The 2018 Chromosome 18 Decoded will be held at the
Renaissance Baltimore Harborplace Hotel
from Monday, July 2nd through Wednesday, July 4th in Baltimore, Maryland.
Registration is OPEN
, and full details can be found by clicking below. Be sure to secure your hotel room at the Chromosome 18 discounted rate here.
Everyone must pre-register online. There will be no on-site registration.
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If you would like to help with the upcoming Chromosome 18 Decoded, consider serving on the
2018 Conference Committee
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You don't need to attend or live in the area to
assist. Contact the 2018 Conference Chair, Nichole McVicker.
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Thank You and Happy Birthday to those that have celebrated their birthdays with
Chromosome 18 by donating their special day on Facebook,
raising funds and spreading the word about our great organization. Check out all the birthday celebrators
here.
Chromosome 18 celebrated
Fiesta Media Day with fun and flair. See the great pictures
here.
Chromosome 18's Executive Director, Neale Parker, joined Stephanie Sage, Director of Marketing & Community Relations at Valero Texas Open on March 1st at the Valero Texas Open - Birdies for Charity Network Mixer. |
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The Chromosome 18 Martini Fundraiser was a wonderful gathering of friends, donors and community members. A
must see and read as
Elizabeth Cody's silent auction contribution created a bidding frenzy!
Thank you to those that donated to the silent auction and participated in the event.
The
Big Give was a BIG success! Read the full story
here.
Kendra Scott Gives Back program benefited
Chromosome 18 again this year. Read more
here.
Chromosome 18 was honored to be an invitee to the inauguration of the new
UTSA President.
Click for details.
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Welcome to the Chromosome 18 Family
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We are delighted to welcome the following families to Chromosome 18.
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Buce Family, Rocky Mountain, Trisomy 18
Burden Family, Southwest, 18p-
Calvert Family, Texas Area
Chapman Family, International, 18q-
De Sousa Family, Canada, 18q-
Emery Household, Texas Area
Giurato Family, International, Trisomy 18
Hallab Family, International
Hinton Family, Southwest, 18q-
Holland Family, International
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Jenkins Family, Great Lakes
Kopren Family, Great Plains, 18q-
Lindgren Family Canada, Trisomy 18
Mah Family, Canada, Trisomy 18
Min Famiy, International
Nieves Family, Northeast
Skyy Family, Northeast
Takayama-Waldon Family, Southwest
Zhang Family, International
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Do you have questions, or would you like more information about something in this newsletter? Contact
office@chromosome18.org
for more information.
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