Some backround
on how I got an oppurtunity to speak at Penn State. The Cystinosis Foundation
gave Renee Columbus my e-mail address. Renee, 
a student at Penn State first e-mailed me then called me to
interview me about cystinosis. She asked me various questions about cystinosis.
I told her about my disease and Gift Of Life, a group I also volunteer with.
They promote organ & tissue donation. I asked if her class had speakers. I
said that I would love to come and speak to her class. So her professor and I
e-mailed each other. We decided on Monday, April 28th 2003. So, on that Monday
I went up to state college and spoke to her class. I was given the entire class
and 50 minutes to speak.
I started by introducing Cystinosis. I gave
a definition, the signs, symtoms, treatments,
medications, ect. I then talked about my life living with cystinosis. I
explained mostly what I wrote about on the Cystinosis Foundation website,
This Is My Story. I also took a bunch of pictures
of myself as a young kid and more recent pics too. The class wanted to know a
lot about when & how I told girls I was dating. Good thing I took my
girlfriend with me. She was a big help. I even passed out a bottle of Cystagon
so that the class could understand how bad it smelled.
I then spoke
about Gift Of Life and Organ & Tissue donation and lastly I spoke
about the Transplant Games.
I have spoken to about 10 other
groups and this was by far the best group that I have spoken to so far. They
asked a lot of questions and seem genuinely interested in my
subject.
Here is a link to Renee's paper she wrote for the Genetics class.
By: Bearry Beard