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2013 Conference  

The 2013 conference will be held in Savannah, Georgia from July 28th to July 31st.   REGISTRATION IS NOW OPEN!  Please visit the conference website to register as well as to get all the details of the conference, including links to make your hotel reservation!  We hope to see you all there!
 


The Syndrome Hole Challenge is On!  

In conjunction with the Annual Registry Golf Tournament, the Registry is hosting the "Syndrome Hole Challenge".  This is a chance for families to donate to their respective "teams".  We invite you to join in the fun!


13th Annual Golf Tournament  

The 13th Annual Golf Tournament will be held on May 18th, 2013.  If you are in San Antonio, we hope that you will consider playing 18 for chromosome 18!  Registration opens on March 13th.

Even if you can't join us in San Antonio, you can still participate by donating items for the auction or sponsoring a hole!

Learn more here!


Relive the Magic!  

Weren't able to make it to the 2012 conference in San Antonio?  You can see pictures and videos as well as a summary of the conference, just by clicking here!


Become a Member!  

You can now join the Registry and pay your annual dues online!

Click here to join or to renew your membership!


What Brings You Here?  Print  


Look Who's Making a Difference!  


Photograph courtesy of Rick Guidotti of Positive Exposure
Stay Current with the Registry!  

Sign up for regular emails with the latest news from the Registry!



We invite you to read previous e-newsletters here. Be sure to fill out the above form to receive future editions!


Welcome  

Welcome to the Chromosome 18 Registry & Research Society!  

If you are the family of a child that has just been diagnosed with a chromosome 18 abnormality, please start by reading this welcome letter from Dr. Jannine Cody, Founder and President of the Chromosome 18 Registry & Research Society.

The Chromosome 18 Registry & Research Society is a lay advocacy organization composed primarily of the parents of individuals with a chromosome 18 abnormality. We are also proud to count among our members affected individuals, extended family members, and professionals. Membership is open to any interested person. We are a 501(c)(3) non-profit, tax-exempt public charity.

Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign.

Becoming a Member

 

Find Out More About How You Can Help 

 

Visit our Photo Gallery


Our Mission  

To help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead healthy, happy, and productive lives. We do this through:


Team 18  

Meet the people who make the Chromosome 18 Registry & Research Society tick!


What's New on the Website?  

7/28 - Another family from "across the pond" has been featured in a local paper!  Neve Mortimer has Ring 18, and her family talks about their experiences in this newspaper article!

3/25 - The family of George Donlan, who has Ring 18, is organizing a fundraiser in the UK and was featured in their local newspaper!

1/19 - Victor Pauca, who has Pitt-Hopkins syndrome, received a wonderful gift this year from his family-the ability to communicate!  Read about it here.  You can also watch a video that aired on CNN here!

11/30 - This holiday season, see how a big sister honors her brother, who has Ring 18!

 

 

 


View Our New Brochure!  

We have a new color brochure!  You can download the PDF here!


Fundraising Updates  

Thanks to the wonderful Furgiuele family from Ontario, Canada for pulling off another great fundraiser for the Registry. They raised $500 by teaming up with the local hockey team, the Buzzers.  Read more here!


Support the Registry  



Contact Us  


A Different Kind of Normal  

Veronica Wain, has made a film about life with her daughter, Allycia. 

18q-: A Different Kind of Normal

As Veronica writes: "This film was created for other families to share with their friends, medical and health providers, and educators to challenge the way that living with disability is communicated and explore a different kind of normal.  The DVD has been used by some parents as a tool for advocacy when their situation is not fully understood and is a wonderful reminder of the rich community we are a part of."

You can purchase a DVD of the movie here!


Visite nuestro sitio en español!  




Our Motivation  



Conference Summaries!  

We've posted a summary of our recent conferences, photos and videos included!

2009 Conference

2010 Conference


Registry on the Web  

The Registry is now on Facebook!  We invite you to join our group!


Upcoming Events  

        View Events Calendar


A Note Regarding Funding
96% of the Registry budget goes to programs and services. Only 3% is spent on administration and fundraising.
Combined Federal Campaign

Federal employees can give through the CFC!  The Registry's CFC number is 10291.  Texas state employees can also donate through the State Employee Charitable Campaign.

 
 

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