Re: Clinical Trial at NIH--listen up!

[Guest guest]

Would just like to encourage anyone interested to contact the NIH

and follow through. In 1985 my son and I made 6 trips to the NIH and

spent a number of weeks there total. The doctors and staff are super

wonderful and my son (who was only 11 at the time) loved it. They

have lots of ways to keep kids happy and entertained when they are

not involved in medical testing. It's not really run like a

hospital, in that patients are dressed and free to interact with

other patients and families. More like a medical hotel. I met some

wonderful families with various genetic disorders and stayed in

touch with several for years.

We had a diagnosis when we went, but for those who don't, this study

would be a great opportunity to access cutting edge technology and

testing. And, as my son was fond of saying, " It's all free! "

Barbara

>

> Thanks Ruth for bringing this to my attention.

>

> http://clinicaltrials.gov/ct/show/NCT00025870?order=4

>

> Alice