National Institute of Health Page ??????

[Kathleen]

I was just reading the page below and noticed how to Prevent obpi...
Also the risk what do you think...
I was not sure about the recovery and care. What do you think?

http://www.nlm.nih.gov/medlineplus/ency ... sesAndRisk

Kath

[francine]

this page nauseates me

it is SO lacking of REAL information

ugh

shows me though that we did pretty damn good work in our Awareness documents

Maybe with the new appropriations $ - they can do some research and produce a more realistic and more up-to-date informational page.

francine

[Kathleen]

That is exactly what I thought of the page.

But two years ago if I had read that page I would have believed it and still thought my injury was very rare and stopped searching for information.

I started my search on the net over 5 years ago and did not find UBPN until 2 years ago. And only after I read the words Brachial Plexus and decided to type it in.
No one ever said that Erb's was bpi. I could only find Merc Manual information..
Just thought it was interesting.
kath

[Judy-T]

I guess we are rare Kath. That did make me sick when I read the article. Someone should definitely send them an awareness package.

[Sharon G.]

The next step in the appropriations process will involve establishing a relationship with NIH. It's a time consuming process and is a lot of trial and error. We are definately starting at the bottom and working our way up. Dr. Belzberg at John's Hopkins has experience in NIH research and I hope to meet with him in the near future. I will keep everyone updated and I will share all the Awareness materials with NIH and ask that they at least update their information so that new parents can benefit from what,for many of us, took a lifetime to learn.

Sharon G.
Government Relations for UBPN

[Kathleen]

Thanks for the update. I wonder how many like us older obpi found this page and then stopped looking.
Kath