Rare Disease Day NYC 2012

This is a video story I did for an assignment for my UCD class. I'm sharing it here because it gives good background information on why we wanted to be a part of the Rare Disease Awareness campaign for Hisiocytosis.


We traveled to the Big Apple this weekend to make some noise for Histiocytosis. The plan was to hit the Today Show both Friday and Saturday mornings with our 300 poster sized photos of people with Histiocytosis. The reason for this date is because February 29 is Rare Disease Awareness Day and we simply wanted to force the Today Show hosts to say the word Histiocytosis on national TV. They did, and more!



Dr. Oz was on the show Saturday morning. Hopefully, he will remember Histiocytosis and talk about it more.

Our photo posters didn't make the tv shots, but we were able to meet and speak to Lester Holt off camera.
A VERY COLD and wet Friday morning!

A small sample of what the crowd looked like.


This is EXACTLY what the goal of our trip to NYC:



Dr. Filopovich is one of the 4-5 doctors in the WORLD that is working hard on finding a cure. The fact that she and Dr. McClain came to NYC, stood in the cold for 12 hours waiting for the opportunity to hopefully talk to the camera, says a bunch about the kind of passion they have for this cause. We are so thankful they do!