My name is Terri and I am a mom with a child who has a rare disease called "Ring14". Eli, in our photo- is my youngest son who has the chromosomal deletion. You can read all about us via our websites below.
I am also the President of our newly formed 501(c)(3) non-profit named Ring14 USA Outreach,Inc. (see our websites at www.Ring14usa.org or www.Ring14usa.net )
I am currently looking for assistance with the production of Public Service Announcements in all formats for all medias.I'd also need assistance in getting these to air or print.
Our first goal is to raise awareness about this rare disease and assist in locating other families that may have a family member with this rare chromosomal deletion. (When I started to perusing this non profit company, we had 40 known diagnosed kids in the USA; now we have found 52...and about 100 others globally.We know there are more people who have this.)
Italy is where the main Ring14 registry,research,community and organization is for this disease.They began 10 years ago this coming May. They have located these children and they have set up a Bio-Bank with the largest research of Ring14 blood samples. Our group here in the USA assists newly found children to get their blood collected and shipped to Italy as well.
A major American University is actually performing a stem cell study with Italy,and not only is this huge, we may see some real treatments come to life to help our kids within their lifetimes! If anyone would like to assist me with getting our PSA 's made for TV,Radio,magazines-all forms of media...lets get this rolling!
All advice and information is appreciated!! What a great resource Stage 32 is!
All My Best,