To Change Lives For The Better
Why Advocate for rare diseases? This past week I was asked this very question, by a man who was waiting for a diagnosis. I had never been asked this question before. It made me think...why do I advocate? I don't advocate because I was told to, I advocate because I want to be the change. When I was thinking about it I looked back on the last couple of days. I had been on Capitol Hill in Washington D.C. meeting with staff of my senators and representatives in their offices. I came to D.C. with a purpose. I wanted to make a change. I might be one out of 20 people they meet with in a day, but I wanted to be the story that they remembered at the end of the day. Living with a rare disease that currently has no cure is hard. When their is nothing else you can do, advocate for what you do know. I know that I can try to make a change for people who have no diagnosis. This week I advocated for The Genomic Answers for Children's Health Act (H.R...
