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| Author | Topic: NIH study |
| Jim |
posted 6/17/06 11:53 AM
All, I just wanted to drop a line on the NIH study that JJ is now a part of. I stongly encourage anyone that would like to get a better picture of this to enroll. NIH cannot solicit for the study so you have to contact them. Please see JJs site and diary entry for link. Since we all know that their is no clinically proven cure, we're hoping that by JJ being enrolled, he may also become eligible for any non-approved FDA treatments that may come up. The way I see it, it can't hurt. Although, it is not a treatment, the study did give us a more indepth look at what JJ has as well as a better understanding. Dr. Warren is extremely knowledgable and was a huge help in answering questions. She actually is required to be present while the scans are being done. We've been told that JJ can come back at just about anytime every couple of months, at no cost, to have further MRIs completed but is limited to only two PETs due to the radioactive material going into his system.As I stated, no cost. NIH is willing to fly JJ and one parent back on their dime. You stay free at the "Children's Inn" (right across the street from the hospital). They have many crafts and things for the children to do and is semi-structured like "Give Kids the World". Shuttles to and from the airports are also at "no cost".Jim http://www.jjsmiracle.com |
| jenny harpster |
posted 6/28/06 5:44 PM
DR. WARREN IS THE BEST!!! WE FEEL THAT HANNAHS TIME AT NIH REALLY LENGTHENED THE TIME THAT WE HAD WITH HER. OUR PRAYERS ARE WITH YOU. HANNAH HARPSTERS FAMILY |
| tina |
posted 1/4/07 10:15 PM
I wanted to let you know we have contacted NIH & are in the process of making arrangements. Should hear something tomorrow possibly going this month.Will keep you posted. So far they seem very helpful. Dr. Warren herself called. http://carepages.com katiemetz |
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