The NIH/NIA has suddenly shut down our on-going EDS research study. Now over 10 years worth of data/samples: Over 2,000 patients clinical data, 20,000 biospecimens from all diagnoses, clinical data and images, plus data from 500 on the waiting list. All this will now be warehoused and basically forgotten...left to rot. Without allowing any other researchers to have access to this vital, potentially life-saving information. What a horrific shame and such a disgrace that this could happen. All that time, money, energy, effort and hard-work thrown away and discarded so easily. At the expense of all those who gave (NIH/NIA) free use of their entire body, their blood, tissues and x-rays scans...etc. In the HOPE that it would yield answers that could save their lives and their childrens lives. That through these donations, they would one day have a better quality of life and maybe even a prolonged life. Its these lives that are now left to suffer even more without that HOPE!!! Could you please take a moment to sign this petition and share it with your family and friends? To help all those with Genetic Connective Tissue Disorders (EDS, Marfan, Sticklers), other related disorders and all kinds of familial aneurysms. Thank you so very much!!!
Posted on: Mon, 18 Nov 2013 06:17:09 +0000