The Chromosome 18 Registry and Research Society

I'm inspired to share with you tidbits of The Chromosome 18 Registry and Research Society.

Some of the affected individuals have significant medical needs.  The story is unfortunately all too uncommon: insurance decides to DROP said individual from coverage because they require "too many surgeries".  What do our members do?  Create a FB page to collect donations for the family!

Another affected child needs surgery on a few issues.  Many of us know the feeling of the anticipation of surgery so of course, we flood as much virtual support to this family as possible!

Here's a big one: Annual conferences are held in a different city each year, with the registry's hometown of San Antonio hosting every 4th year.   You are probably wondering who coordinates the conferences?  The answer is volunteers and Board Members!  To give you a sense of the enormity of this task, I've been told that it is much like planning a wedding.  Planning for a given city begins 2.5 years out!

Let's also mention the tireless efforts of those who hold fundraisers in honor of the registry!  Some of the larger fundraisers take months to plan, but raise thousands of dollars for the registry!

The registry's "office" is actually the basement of our founder and President, Dr. Jannine Cody.  She along with two other staff members and Board Members, lead the registry.   97% of monies raised are spent on educational and research programs.

If you have a moment,  I'd love for you to explore the registry's website to learn more: www.chromosome18.org.  Or, if you want, post a question and I'll do my best to answer!