210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
Chromosome 18 - September News


Tune in to the Chromosome 18 Channel
Want to take a look inside  The Chromosome 18 Clinical Research Center and meet  the staff and hear about the latest research and discoveries ?

Check out our newly updated Youtube channel!  Watch and share videos and be sure to leave your comments.
Are You Registered?

For North America ONLY
 
As a valued part of the Chromosome 18 family, we w a nt to ensure that you are receiving all the FREE benefits that the membership Chromosome 18 Registry & Research Society can offer you.   Just because you might be currently receiving e-mails or a part of our Facebook group,  we want to be sure that each member of your family is included in our database and can enjoy the benefits of membership. 

Even if you feel like you have recently registered, please make sure you take time to re-register so we can ensure that each of your family member's information is complete and accurate.  

The benefits of re-registering will ensure that you continue to receive Registry news and Research updates, invitations to our annual and regional events and other important news and articles.

 Thank You, Valero!
 Troy Haby - Director Corporate Sponsorships at Valero Energy, Leah Gransbery, Joe Gorder - Chairman, President & CEO Valero Energy, Neale Parker.
A huge thank you for a
$20,000 check donation received at the 2016 Benefit for Children Charity Awards Breakfast from Valero Energy Foundation.

2016 Election - Nominations Now Open
Do want to get more involved? This year we are opening nominations and self-nominations for the upcoming elections and this year the following positions are opening up:

Regional Coordinators
Mid-Atlantic  
Northwest                                                    
South Central                                             
Southwest
            
             Syndrome Coordinators
             Ring 18                                                        
              18p-   
                                                              
Nominations will be accepted until October 31, 2016.  Please submit your interest, questions and nominations to office@chromosome18.org

Why I...
We're introducing a new section of our monthly newsletter, "Why I..." where members, donors, self-advocates, volunteers and more let us know why they do what they do for The Chromosome 18 Registry & Research Society. Contact Leah Gransbery at gransberyl@chromosome18.org for feedback and submissions.

Why I Volunteer for the Registry
by Liz Woodfield
Liz & Charlotte Woodfield
So if you're reading this you can relate to my life more than most. Charlotte has Tetrasomy 18p and I can't do anything to make that go away.  So what can I do?  I can volunteer at the Registry, in the position of a Regional Coordinator - it's a great way to get to know all the families in my area.  I can volunteer to help raise money for research  - no one else is going to fund the research about Chromosome 18 anomalies other than the families - a sad but real fact.



Join Us & Run for the Chrome!

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.

 
October 15 & 16, 2016


November 5 & 6, 2016

December 3 & 4, 2016


 


Thank you to all the families, participants, donors and cheering squads at the recent Philadelphia Rock'n'Roll 5k & Half- Marathon held September 17 & 18. Your spirit was inspiring and your fundraising efforts were off the chart with over $15,000 raised!  Check out this amazing race day  video and feel the Chromosome 18 energy!

NEW! Self Advocate Ambassador Program

A number of self advocates have been asking if they can help the Registry in some way, so we would like to say a resounding YES!  Because of this, we would like to announce our new program of volunteering to be a  Self Advocate Ambassador.

How you can help?  Do you enjoy writing letters?   Sending a short video thank you? Helping with database work? Being a spokesperson for the Registry?  Virtual office assistance?

How much time would it take:  You can spend as much time as you would like or just a few hours per month

How to get involved: Just e-mail office@chromosome18.org or 
call (210) 657-4968

We look forward to working with you!

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  October 13 &  November 10.

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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