Amy

Living with Xeroderma Pigmentosum

Xeroderma Pigmentosum (XP)

I like going to Disneyland and to movies. I love to surf- it makes me feel like flying! I love to go to conventions like Comic Con and dress up in cosplay.I like to set goals and reach them. I think if you believe you can do something, you can do it!

To learn more about Xeroderma Pigmentosum (XP): Click Here

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It's important that the voices of people with genetic conditions and disabilities are heard. I want to use my voice so nobody else speaks for me, and maybe I can help other people use their voices as well.
Why is Advocacy important to you? –
I like Disneyland, Marvel, surfing, geology, Harry Potter, Pokemon, reading, and drawing. I don't think about my rare disease all the time! But, almost every day I do notice things that need to change to make the world more accessible.
What would you like people to know about you?
I have gotten to speak in front of a huge audience at Disney's D23 Expo, to members of Congress, to medical students, and to people who are writing about rare disease. At first, my voice was a little shaky. But, now it is strong.
What accomplishments are you the most proud?
More accessibility for and inclusion of people with disabilities in every part of life - not just as an add-on or afterthought, but as something that is seen as normal.
What change would you like to see in the world?

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