Wednesday, July 16, 2014

RDH12 Gene and Lebers Congenital Amaurosis (RDH12)

The other day, someone found out blog by searching for LCA and RDH12.  They reached out with a comment wanting more information - but did not leave a way for us to contact them.

This post is for them - in case they return.

We would love to hear from you!  We have a very active foundation for RDH12 research.  We are working with Dr. Thompson at the University of Michigan and Dr. Ali at the Moorfields in London.  We are the only group at this time that is exclusively funding RDH12 research.  We have been a foundation since 2010, and have raised over 1 million dollars for RDH12 research.  We are looking at being at the FDA later this year and in clinical trial by the end of 2015.

If you would like to learn more about us, you can check our foundation page at www.rdh12.org or email us at RDH12@RDH12.org.

Please reach out.  Research is moving fast.  Right now we have 19 families and 16 children with RDH12 as part of our group.  We are close knit and have learned a lot from each other.  We are a support group above all else.

We hope to hear form you soon!

Sincerely,
Jennifer

1 comment:

Anonymous said...

I'm sure they will like this post!

Take care ,
Shayla M.