The National Institute of Health (NIH) has halted the only national study on rare connective tissue disease including Fibromuscular Dysplasia, Ehlers-Danlos, Marfans, Aneurysms and Sticklers. 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, Ehlers-Danlos and brain aneurysms, 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.
Please sign our petition and tell the NIH to return funding to this critical study.
For information on the progress already made, please visit the NIH website: http://projectreporter.nih.gov/project_info_description.cfm?aid=8552497&icde=18270239&ddparam&ddvalue&ddsub&cr=5&csb=default&cs=ASC
Note from Kari Ulrich:
Thank you everyone who has participated in signing and sharing this petition. I am not affiliated with any organizations, nor do I have any disclosures. I am one rare disease patient trying to make a difference. I do not recieve any compensation. If you would like to help spread the word of this petition you may promote this petition with a sponsored ad, button on the right. I do not recieve any funds.
A special thank you to Jason Barnaby for helping with the wording of this petition, this has helped so the general public can understand our plight.