The other day I posted this status to my Facebook...
With all this ALS stuff going on, makes me want to start raising awareness for other rare diseases that no one knows about. How about Hirschsprung's Disease. That's what my son has. And it virtually gets no funding for research, no shout outs, no challenges, no news time, no media time, nothing. Nothing. Yet these kids are just as strong, endure just as much - maybe more - than any other person fighting any other disease. As do their parents. So who will repost this to honor my son? Or post a sign for him saying Way To Go Buddy, you survived your surgery at 6 days old. Or donate money to fund Hirschsprung's research? No one cares because it's rare and not that important because it's not an "epidemic." Help me raise awareness for Hirschsprung's Disease. Share my status.
With this picture of Isaac. I asked all my friends to share my status and to keep sharing it. I got such a huge response, emails, messages, calls about what we could do to raise awareness. I have so many people willing to put in the work to raise awareness, start a non profit organization, start challenges like the one currently circulating for ALS. With that, I created this Facebook page to raise awareness for Hirschsprung's Disease. And a lot of other rare diseases that do not get ANY media coverage.
Pop over and like our page and share it far and wide!!! This is just the beginning people.. Lots more to come. Here is the link to our Facebook page..
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