Yep, I have that song in my head. And if you don’t know what that song is, then you aren’t as old as I am! 🙂
For the past three days, I have been working to find information on various GD23-related items from researchers, doctors, and other interested parties from multiple countries. Even though I have an incredibly long way to go, I feel like I have finally made some progress in learning what exactly is going out in terms of GD23 research and what I can do to help! I can’t go into details right now until things progress a bit, but you better be sure I’m knocking on every door imaginable!
And I am so pleasantly surprised at how wonderful many of the people who I have asked for information from have been! Especially Willy (you know who you are) who even offered to help with something I thought was an impossible request (even if he can’t find out!).
This is great that people are so willing to help!!
Stephanie’s last blog post..Do You Twilight?
I’m old enough to remember. 🙂
I’m glad you feel you are making progress and that you are getting a lot of cooperation. You are right in that coming together is what is going to help find treatments and a cure for Gaucher’s.
Hannah is absolutely precious! Anytime you’d like to chat, please feel free to contact me. Koby has been through a myriad of issues concerning his rare disorder of Cystinosis ( http://www.cystinosisfoundation.org ), so we can offer support for you and your family.
Angela
http://momsgreatescape.blogspot.com