Updates
October 25, 2009
Watching the stories pour in from people who have lost loved ones makes my own family member's struggle feel even more urgent. I am spending my evenings reaching out to researchers to see why this gap in funding has persisted for so long. We need them to see that we are not going to be quiet until they start prioritizing scientific breakthroughs.
October 25, 2009
Seeing this kind of momentum means so much when I think of the empty chairs at our family dinners caused by this devastating lack of answers. We are finally proving that the community is finished waiting for someone else to prioritize real scientific progress.
Reached 100 supporters
October 25, 2009
6 Comments
My wife suffers so much. Stop the newsletters and start the science. We need real answers not just pamphlets.
Seriously? Since 2005? That is absolutely pathetic.
Living with this every single day is a nightmare. There is no reason they should be sitting on this much money without putting it toward a cure. Do better.
Total waste of donations if it isnt going to research. Cut the overhead and help the people who actually need it. Families are falling apart because of this.
Fix this now. People are dying.
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Updates
October 25, 2009
Watching the stories pour in from people who have lost loved ones makes my own family member's struggle feel even more urgent. I am spending my evenings reaching out to researchers to see why this gap in funding has persisted for so long. We need them to see that we are not going to be quiet until they start prioritizing scientific breakthroughs.
October 25, 2009
Seeing this kind of momentum means so much when I think of the empty chairs at our family dinners caused by this devastating lack of answers. We are finally proving that the community is finished waiting for someone else to prioritize real scientific progress.
Reached 100 supporters
October 25, 2009
6 Comments
ive got EDS and im so tired of being ignored. we deserve better than just websites and newsletters.
My wife suffers so much. Stop the newsletters and start the science. We need real answers not just pamphlets.
Seriously? Since 2005? That is absolutely pathetic.
Living with this every single day is a nightmare. There is no reason they should be sitting on this much money without putting it toward a cure. Do better.
Total waste of donations if it isnt going to research. Cut the overhead and help the people who actually need it. Families are falling apart because of this.
Fix this now. People are dying.
Help this petition grow
Share it with friends to help reach 250 signatures.
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ive got EDS and im so tired of being ignored. we deserve better than just websites and newsletters.