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Chromosome 18 - December News


Final Days of Phantom Tea & Wine

Throughout December  we ask our members to invite their family and friends to a tea or wine party (virtual or actual), sipping  tea or wine in  honor of  those we care about with a chromosome 18 condition while raising awareness and funds for Chromosome 18 Registry & Research Society.

If you have yet to send your  Phantom Tea & Phantom Wine  invitations, it's not too late. You can even print your invitations or send your friends and family the general Phantom Tea or Wine link (below) asking for their support.

Click on item below to view and print from your home

Visit our fundraising sites to donate directly or to set up your fundraising page to share

New Messaging Platform - RYVER

We are pleased to announce that we will be rolling out a new messaging platform called RYVER (pronounced River).  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 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.

Please look for an email from the Registry early next week with RYVER sign up information.  

RYVER is available for app download for your desktop on your Windows or Mac as well as your Android and Apple devices.

Please check out the RYVER User Guide and Tutorials for more details.

NEW - Live Broadcasts

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 on weekdays and noon CST on weekends ( Are you sensing 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 first live broadcast that aired Sunday, December 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.

Early 2017 Events 

Here's what we have scheduled for early 2017






Official Fiesta Event - Starfish Dash 5K Run / Walk


Valero Texas Open - Birdies for Charity

Have an event (fundraiser, get-together, etc.) that you would like to share?   Let us know , we'd love to feature it in our newsletters and  through  our social media channels.
2016 Board Announcement & Open Positions
We have concluded our election and are pleased to present the 2017 Chromosome 18 Registry & Research Society Board of Directors.  Thank you to those that stepped forward to nominate and self-nominate for the open board positions.  
 
Open Positions 
We are still in need of a Treasurer for our Executive Board and Director of Individual Fundraising 
   
For inquiries and descriptions, please email  office@chromosome18.org

 Past Fundraising Super Stars
The San Antonio Rock 'n' Roll 5K, Half-Marathon and Marathon took place on the soggy morning of Saturday, December 3rd.  Although the weather was less than ideal, our  participants and fundraisers shined, raising a total of nearly $12,000!

Thank you to all those that trained, donated, participated and volunteered for the event and a special shout out to our top fundraisers, Jeff Pompeo and Elizabeth Cody!
   


Natalie Abreu-Horne hosted her 3rd annual Tea Party on December 10th.  She helped raise money while bringing families together to share indoor and outdoor activities.  Thanks to Florida's sun-kissed weather, donors and volunteers, the event was a great success!






   
Neale Parker and Cynthia Parsons hosted a Phantom Wine event at their San Antonio home on December 2nd.  Guests sampled over five varieties of Sessi wines while learning about Chromosome 18 and mingling with friends.
Chromosome 18 Clinical Research  Center Tours 

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  January 12, February 9 & March 9

For more information or to register for an upcoming tour, contact Neale Parker, Executive Director at parkern@chromosome18.org

Best Regards,
 
Leah Gransbery
Director of Operations
The Chromosome 18 Registry & Research Society
(210) 657-4968 
gransberyl@chromosome18.org   
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