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Kari Ulrich, Volunteer Mentor

Posts: 217
Joined: Jul 15, 2011

The National Institute of Health (NIH) has halted the only national study [...]

Posted by @kariulrich, Nov 30, 2013

The National Institute of Health (NIH) has halted the only national study on rare connective tissue disease including Ehlers-Danlos and Fibromuscular Dysplasia These diseases result in severe disability and even death for those afflicted. It represented the only hope thousands of families had in finding the cause and cure for these rare disease. We are asking the NIH to restore the 10 year study.
I have Fibromuscular Dysplasia and Ehlers-Danlos, and like so many people, have lived with the stigma and suffering created by the mysterious disease. My only hope was the NIH study in which I was a participant. The study was and continues to be the only comprehensive, national study. When I received a notice the study was ending and the critical samples collected could be lost I knew I had to act. Together with other participants and health advocates I started a journey to save the study. 
Restoring the study will return hope, continuing the extensive work done over the last 10 years. It will ensure all the progress we have made will not have been in vain and keep us on a path to a cure. 
If the NIH continues with their current plan to end the study it will leave victims and their families without a place to turn for answers and send a message our lives are not worth the investment of finding a cure. Even worse, the samples and results already gathered could be lost, leaving scientists to start over.
We have over 5,000 signatures supporting our petition. It is my goal to get 10,000 signatures to present to NIH/NIA. With this it is my expectation that the study will be reinstated and we will be assured that our data and specimens will not be lost. I remain confident that with each signature we are spreading awareness.


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