Monday, April 6, 2009


Well, I'm home. And I'm sick. This is nothing new for me. In fact it's right on schedule, have an extremely emotional weekend, get sick with a nasty cough.
This past weekend in DC was one of the most important weekends of my life. I got to meet other people with Neurofibromatosis. I didn't expect I would cry when I spoke to the first person there. The organizer of the weekend. I spoke to lots of parents who's small children have NF. I got to speak to other people who were (relatively) close to my age who have NF. Luckily I didn't cry when I met them. Saturdays itinerary was filled to the brim, doctors spoke at length about what IS know about NF. Fundraisers told us what they're doing to help raise money so that research can be funded. After each doctor spoke there was a brief Q & A where we had the chance to ask about the things that might have been confusing. And during every one of those Q & A's I cried. They showed us videos they produced to help raise awareness, I cried. Those videos are REALLY well made. There was a man there, a police chief. A big, burly, strong man. HE cried.
The two most important things that I got out of this experience are the information about the disease and where I can go to get help, and I no longer feel so isolated. I met others who know what it's like. They went through it too. Some of them had cases that were more severe than mine, but that didn't stop us from finding common ground.
If you are interested in learning more about NF, go to find the video I talked about. Have a box of tissue handy. You'll need it.

--Little Bird found birds of a feather

p.s. That's


Christopher said...

I couldn't find the video, but I did donate. I hope it helps sweetie.

Little Bird said...

The video is under "about the foundation". And THANK YOU!!! Thankyou thankyou thankyou!
Every little bit helps!