All these facts about rare diseases are not really that positive if the person who reads the facts doesn’t get to know people who have the disease. That’s why blogs are so important. If you only see a number, you might not know the whole story. You might assume that I am “suffering from” XP/TTD. I am actually “LIVING with” XP/TTD. You might think that I’m always thinking about my rare disease. But, I’m not. I’m thinking about going to the movies, or what I’m going to draw, or something my friend just said. I do worry about my disease sometimes. It’s just not as scary or sad as people assume it might be when they read the statistics. It might seem strange to you to live with a rare disease, but it’s just normal for me. That’s what you’ll learn if you read my blog and those of the other Ambassadors. What do you think? Are statistics like this helpful?