Share this on:
About this iReport
  • Not vetted for CNN

  • Click to view kaulrich's profile
    Posted December 29, 2013 by
    Albert Lea, Minnesota

    More from kaulrich

    NIA Kills Ten Years of Research, Patients Petition for Study Reinstatement


    Sarah Kucharski CEO of FMD Chats states "FMD patient Kari Ulrich has been a leading voice in the community for years. Upon learning that a National Institutes of Aging study in which she was a participant suddenly was closed, Ulrich began to call attention to the study's closure and push government leaders to recognize what impact the study's closure will have on the patient community."


    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. Petition:

    What do you think of this story?

    Select one of the options below. Your feedback will help tell CNN producers what to do with this iReport. If you'd like, you can explain your choice in the comments below.
    Be and editor! Choose an option below:
      Awesome! Put this on TV! Almost! Needs work. This submission violates iReport's community guidelines.


    Log in to comment

    iReport welcomes a lively discussion, so comments on iReports are not pre-screened before they post. See the iReport community guidelines for details about content that is not welcome on iReport.

    Add your Story Add your Story