Two weeks ago, I got to attend Rare Disease Week on Capitol Hill in Washington, DC, as a representative from California. I got to hang out with other Youth Advocates, and it was fun! What we did was we went to the Senator’s and Representative’s offices to talk to them about support rare diseases and people with illnesses. I spoke about supporting the National Institutes of Health (NIH). I think this is very important because the NIH is where I learned about my own rare disease. They also do research on many other diseases, even common diseases! They look for cures.
Another fun thing I got to do while I was in Washington was meet Rick Guidotti from Positive Exposure. I did photos with him in the Senate office building. It was fun because we took pictures all through the halls – and we even sneaked out on a balcony, and accidentally walked through a live news broadcast. I can’t wait for you to see the photos!
The best part of Rare Disease Week was that I got to use my voice more. I think it’s important to speak out because if you don’t use your voice, people will never get to know you.