

Vascular Ehlers Danlos Syndrome


Vascular Ehlers Danlos Syndrome
The Issue
To save lives. We are so close to a treatment for Vascular Ehlers Danlos Syndrome. It is a life threatening connective tissue disorder with ruptured organs, veins and arteries, aortal dissection, chronic pain and fatique. At the genetic level a knock down of the allelle will stop the horrific symproms that have taken many family memebers, including my father, cousins, baby and aunts. Both my children ahve VEDS as do I. I am in the later stages with multiple anuerysms, ruptured kidney and pulmonary artery. I want to see my children have this treatment. NIH and NIA Astra Unit at Harbor Hospotal is so very clopse, Dr. Nazli McDonnell and her collegues are near a treatment that can go tot the human phase only if they remain open and stay funded. https://wwws.whitehouse.gov/petitions#!/petition/increase-nih-funding-33-billion-proposed-flat-307-billion-dollars-will-hurt-econmy-and-medical/FNr0kRbj

The Issue
To save lives. We are so close to a treatment for Vascular Ehlers Danlos Syndrome. It is a life threatening connective tissue disorder with ruptured organs, veins and arteries, aortal dissection, chronic pain and fatique. At the genetic level a knock down of the allelle will stop the horrific symproms that have taken many family memebers, including my father, cousins, baby and aunts. Both my children ahve VEDS as do I. I am in the later stages with multiple anuerysms, ruptured kidney and pulmonary artery. I want to see my children have this treatment. NIH and NIA Astra Unit at Harbor Hospotal is so very clopse, Dr. Nazli McDonnell and her collegues are near a treatment that can go tot the human phase only if they remain open and stay funded. https://wwws.whitehouse.gov/petitions#!/petition/increase-nih-funding-33-billion-proposed-flat-307-billion-dollars-will-hurt-econmy-and-medical/FNr0kRbj

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Petition created on March 23, 2012