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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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Chromosome 18 - January News
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Please check your mailbox as early next month you will be receiving a wonderful opportunity to support Chromosome 18 Registry & Research Society in a couple of different ways. One way to support Chromosome 18 Registry & Research Society is through our newly introduced Legacy Giving Campaign
that we hope you and your family will give serious consideration. This Legacy Giving Campaign allows us to plan more effectively for the long-term future of the organization. When you are planning your financial estate or bequests, we ask that you will make our organization a beneficiary. Online Legacy Giving Campaign brochure can be found
here.
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The other way to support Chromosome 18 Registry & Research Society is through our partnership with Birdies for Charity, a fundraising program that gives participating charities the opportunity to generate contributions through the Valero Texas Open. By participating in this fun event, you
can win great prizes while helping the Registry and even providing the organization opportunities to receive additional funds from Valero Energy. 100% of all funds designated to the Registry through Birdies for Charity get passed on to us.
For the first time this year we have an anonymous donor that will match donations up to a total of $10,000. This generous matching donation will not be made until our individual fundraising reaches over $10,000, so please participate! Our goal this year is to reach $35,000.
Online Birdies for Charities applications can be found here. Our mailing will include both opportunity brochures, please contact us for more information or for any questions.
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Valero Texas Open - Birdies for Charity
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Starfish Dash - Run / Walk
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Official Fiesta Event
Starfish Dash - Run / Walk
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Come join us in The Chromosome 18 Registry & Research Society's
Starfish Dash - Run/Walk. It
is a great event for all ages and the entire family can participate. The course leads you through the UT Health campus. The official Fiesta event is FREE to all participants but we suggest fundraising / donations to participate. Strollers and wheelchairs are welcome but no pets are allowed on campus.
A Health and Wellness Fair and Market Place will accompany the event. Lots of fun activities will be available at this very family-friendly event. T
he more funds we raise, the faster the research center can develop treatments to improve the lives of those affected by chromosome 18 conditions which include many cognitive and physical impairments. Click here
for details.
Registration to open in February
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The 2017 Conference will be held at the Naperville Marriott Wednesday, July 12th through Saturday, July 15th. Naperville is located approx. 35 miles outside of Chicago and has a downtown Riverwalk, many great places to visit and is consistently voted as one of the best places to live.
Come and join us in is what is sure to be a great
Conference and that you will get to see some old friends and meet many new friends. If this is your first time we strongly encourage you to come with the whole family as we have lots of different programs and fun events for everybody.
Over the course of the three days many different speakers, events and are available  including 4 tracks of presentations for: the families of young children, the families of adolescents/young adults, siblings and self-advocates.
The sibling track is planned and run by our adult siblings trained in child development and facilitation. The self-advocate track is for those affected individuals over the age of 16 who can function independently within the conference environment. There will breakout discussion sessions for each syndrome group as well as for regional groups. Friday evening will be ladies night, a
chance for the ladies to socialize together and Thursday evening will be men's night out. The conference culminates on Saturday evening with the Starfish Dance and can guarantee that you will have so much fun, making it so hard to say goodnight and goodbye to your chromosome 18 family.
Conference details can be found here. You can book your room now here or call +1-630-505-4900
Stay tuned for registration and additional information to be announced next month.
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RYVER - Our New Messaging Platform
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RYVER, our new messging platform is here! We've heard you and know how important it is to you to have a private means of communicating. This platform will allow our members to engage in communications with other members and Chromosome 18 coordinators. Through RYVER, members can exchange messages, ask questions, share pictures and more. This wonderful benefit is available,
free to Chromosome 18 Registry members only.
In order to be approved to participate in the forums, you will need to be a Chromosome 18 Registry member and your user name must be your first and last name. The first forums to go live will be Syndrome Forums (Ring 18, Tetrasomy 18p, Trisomy 18, 18p- and 18q-) on December 28th and will be open to parents and guardians of affected child only. All other forums (Regional, Self-Advocate, Sibling, etc.) will open on January 11, 2017 to all Chromosome 18 Registry members.
To enroll in this wonderful,
free service, click
here
RYVER is available for app download for your desktop on your
Windows
or
Mac
as well as your
Android
and
Apple
devices.
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We are excited to share with you the launch of our live broadcasts.
We have the goal of airing a live, 18-minute broadcast on the 18th of each month at 1800 / 6:00 p.m. CST (Are you seeing an 18 trend? ). Here our presenters will be talking with you and answering your questions. What a great way to see and chat with our wonderful group of physicians, researchers and staff.
Topics and presenters will vary. We want to hear from you on your broadcast ideas - the possibilities are endless. Send us your topic and presenter suggestions
here.
Check out our live broadcast that aired Sunday, January 18 as Dr. Jannine Cody discusses the good and the bad of gene therapy and how it could relate to chromosome 18.
Be sure to mark your calendars for the next scheduled live broadcasts and stay tuned
to RYVER and Facebook for links, invitations and updates. Plus, follow the Chromosome 18 Registry channel on YouTube and you will be notified when our broadcast goes live.
February's live broadcast presenter will be
Dr. Catherine Larson. She will be discussing the topic,
"Helping your child cope with anxiety". We hope to have a large turnout and encourage you to send your questions forward so that Dr. Larson can address your comments and concerns.
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Phantom Tea & Wine Campaign Recap
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Thank you to each and every one of you for participating in and donating to the 2016 Chromosome 18 Phantom Tea & Wine Events. We had a wonderful time seeing and hearing about your Phantom Tea & Wine party successes. Thank you for sharing your stories and pictures and sending in the donations you collected over the month of December. Although we did not quite meet our goal, we are so grateful for your efforts, whether you sent out one Phantom invitation or 100, this campaign was a driven through your determination and passion for our wonderful organization and the terrific and essential research that takes place with the funds raised.
Thanks to you, your family and friends, we can proudly announce that the 2016 Chromosome 18 Phantom Tea & Wine campaign raised just over
$95,000! Think of the research projects that can be funded through your gracious accomplishments!
N
ex
t year we hope to meet our goal and break the $125,000 mark - with your energy and heart we feel that this goal is achievable and paramount to reaching our mission of helping
people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.
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Volunteer Positions Available - We'd Love Your Help
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We are still in need of a Director of Individual Fundraising.
For inquiries and descriptions, please email
[email protected]
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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
February 9, March 9 & April 13
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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