I have a crazy idea, but wish to pursue it, however nutso it sounds. There is a disease called "The worst disease you've never heard of". EB, or epidermolysis bullosa is a connective tissue disease, hereditary with no known cure which affects about 50,000 kids and young people. The victims lack a protein which binds the layers of skin and tissue together. I have a grand niece with this disease. They are called "butterfly children" because their skin is fragile as a butterfly's wings. They can develop blisters simply while sleeping on bed sheets. Fatal for the worst cases, debilitating for lesser victims. It affects all tissue, including the throat and other locations that are subject to ANY friction at all. The disease is not common enough to satisfy the profit motives of the drug companies, so any research has to be privately funded. Now, for my crazy idea.. What if the Jets were to do a "butterfly" TD/sack dance for just one week to raise awareness for this disease? They wear pink for breast cancer... just one game with celebratory "butterfly" TD celebrations could make an immense difference for these forgotten kids. Would/could the Jets be willing to do it? Or another NFL team? How should I go about trying to contact the Jets? Am I being completely unrealistic, or might it be a great idea? Thoughts?
ANY suggestions/ideas on what to do first? I really want to make a serious attempt at this... it would make the lives of these kids and their families vastly better...
Try contacting the players on twitter. It's a way to contact them directly, without going through the Jets who will probably give you a difficult time.
