Hi All- National EB Awareness Week is 10/25/14-10/31/14. Please make a difference. Like any EB page on Facebook and share with your friends. Ours is Tyler's EB Awareness. Share any EB website with your contact list. Email your local paper to write a story, email your local news station to run a segment. Spread the word about EB so that more will take interest. There needs to be more awareness so that a cure can be found.
It was so frustrating watching 60 Minutes last night. They were talking about genetic testing and kept mentioning diabetes and different kinds of cancer--- WHAT ABOUT EB????? Mention EB for gods sake!!! UUUGGGHHH.
I understand that those diseases are terrible but have you seen an EB child. To watch an innocent victim suffer. It is horrible!!! Please make a difference this week. Make a donation to an EB organization or even share awareness. The more that know the better those kids will be!