Today, I interviewed Dr. Sokol from Children's in Denver. He is the principal investigator of the Cholestatic Liver Disease Consortium (CLiC), and in our conversation, he mentioned that a longitudinal study of Alpha-1 children is in the process of being approved. When it is approved, he will be able to share more details about the study. Can I just say YAY? :)
In any case, Dr. Sokol made it clear that he encourages the parents of children with Alpha-1 to sign up via the Contact Registry on the CLiC web site:
http://rarediseasesnetwork.org/clic
Oh and Dr. Sokol said both children pre- and post-transplant are encouraged to be participants. He said a goal is to answer that never-ending question of why some children with Alpha-1 have severe liver disease and why the majority of the others don't. Wouldn't it be great if they could answer that question?
One last thing, this study is international because there is a research center located in London. So, UK families, you are invited too.
WOW, I'm pretty psyched about the interview, can ya tell? You should have seen me before it though. I was a bundle of nerves. I'm not really sure why except that this means so incredibly much to me. Alpha-1 needs a cure now. My childrens' lives depend it as well as all of our Alpha friends. Long live the Alphas!
I signed Grace & Meghan up for the registry last year. Thank God for researchers like Dr. Sokol. I only hope more researchers are inspired by his great example.
Jen, the incredibly impressed parent of 2 Alphas
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