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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - October News
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It's Time for Phantom Tea & Something New
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This year we are adding something NEW as we're celebrating our 21st year of The Phantom Tea. We are "Coming of Age" on this 21st year and proud to announce the addition of The Phantom Wine. During this time, we ask our members to invite their family and friends to a tea or wine party (virtual or actual).
On Sunday, December 4th, people around the world will sip tea or wine in
honor of
those we care about with a chromosome 18 condition.
The vast majority of
our funding comes directly from Chromosome 18 families and their friends and families who want to make a difference in the lives of every affected person and their loved ones.
Please look for your Phantom Tea & Phantom Wine invitations to arrive in the mail shortly. If you need a
dditional invitations, please contact us at (210) 657-4968 or
[email protected]
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New Executive Board Secretary
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It's a great pleasure to announce that Dave Aldrup has agreed to fill the Secretary term as Kristen Earl has been filling the position for an extended period of time until a new Secretary could be found. Kristen has done an outstanding job with her service in helping steer the Registry during transitional times and we thank her for this commitment and dedication.
To learn more about Dave, click
here
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2016 Election - Nominations Now Open
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The following positions are open for nominations or self-nominations to serve two-year terms beginning
Januar
y 1, 2017:
Regional Coordinators
Mid-Atlantic
Northwest
South Central
Southwest
Syndrome Coordinators
Ring 18
18p-
Open Board Positions
There are two positions on the Board of Directors that are open in mid-term due to resignations. Appointments will be made to these positions to fulfill the remainder of the terms. Please click on open position for job description and expectations.
Other Open Positions
Director of Individual Fundraising
Director of Social Media
For questions, nominations or self-nominations, please email
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Past Fundraising Super Stars!
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Bob English raised nearly $400 at his 39th Birthday Kickball Fundraiser and was featured in his local newspaper! Thank you, Bob!
Melia Gorrell asked for donations to the Registry in lieu of gifts
birthday this year. Her fundraising efforts made it possible for her to donate $350 to the Registry! Thank you, Melia!
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Future Shooting Stars - Happening Now!
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Watch out for some great Chromosome 18 t-shirts and polos coming soon from Shelley and Sarah Hunt.
Planning on hosting an individual fundraiser to benefit the Chromosome 18 Registry & Research Society? We'll help you get the word out! Please let us know by emailing our office at [email protected]
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Join Us & Run for the Chrome!
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Join The Chromosome 18 Registry & Research Society's health conscious fund-raising event, Run for the Chrome. Our goal is to bring together health-minded people to run/walk to raise awareness and money for the Registry's mission.
Click on the city/event for more information
and to become a fundraiser for race entry.
December 3 & 4, 2016
The St. Louis Arch was an amazing backdrop for the Chromosome 18 - Run For The Chrome
Rock 'n' Roll 5k, 10k and Half-Marathon held on October 15 & 16, 2016 There were
fewer runners this year, several new runners, and great spirit among the team!
Thank you to race host, Jo Ann Baum, all the families, particip
ants, donors and cheerleaders along the way.
Your wonderful efforts helped raise over
$4100,
providing invaluable research and support for our families.
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Self Advocate Ambassador Program
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Calling all Self-Advocates! Want to help out the Registry? Become a
Self Advocate Ambassador.
You can spend as much time as you would like or just a few hours per month.
call (210) 657-4968
We look forward to working with you!
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Chromosome 18 Clinical Research
Center Tours
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In the San Antonio area?
Come tour The Chromosome 18 Clinical Research Center!
On the second Thursday of the month, from 11:30 am to 12:30 pm, the Research Center will be opening its doors to registered participants who will meet the staff and researchers, learn what current studies the team is working on and experience a hands-on tour of the facilities.
Upcoming tour dates are
November 10, December 8 & January 12
For more information or to register for an upcoming tour, contact Neale Parker, Executive Director at
[email protected]
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Best Regards,
Leah Gransbery
Director of Operations
The Chromosome 18 Registry & Research Society
(210) 657-4968
gransberyl@chromosome18.org
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Kim and Dave Stoddard are hosting the 
Chico Charms, a fundraiser by Nichole McVicker.
