User:R500Mom

What Wikipedia Means To Me

My name is Chris Hempel and I live in Reno, Nevada, USA. I am Mom to identical twin girls, Addi and Cassi Hempel, who are 10 years old. In October 2007, my twins were diagnosed with Niemann-Pick disease, type C, an ultra rare and fatal cholesterol metabolism disorder which is often referred to as the "Childhood Alzheimer's." There are only 500 known cases worldwide.

My main interest on Wikipedia is trying to get proper medical information posted on Niemann-Pick disease, type C and the NPC1 gene and diseases related to the gene -- cholesterol, dementia, progressive neurological disorders, lysosomal storage diseases, HIV-AIDS, Ebola and Obesity. I would like to decrease the amount of time it takes to diagnose Niemann-Pick disease Type C and to educate the world on why ultra rare diseases like NPC are important to millions of people. Cholesterol metabolism at the cellular level is what Nobel Prize winning cholesterol scientists Brown and Goldstein are studying.

It took two years with multiple trips to Stanford, Benioff Children's Hospital Oakland and Mayo Clinic for my twins to be diagnosed with Niemann-Pick disease, type C. During that time, I spent hours on Wikipedia and other medical web sites trying to read about the symptoms my twins exhibited - hepatosplenomegaly, ataxia, dementia -- but Niemann Pick disease, type C was not mentioned when I searched these symptoms. Had this information been available to me or the doctors reviewing their complex case, I am sure a diagnosis would have been made sooner and we would have saved hundreds of thousands of dollars that were lost on testing my twins, hospitalizations, etc.

Each day I spend hours conversing with leading doctors and research scientists all over the world learning complex medical genetic information that I never really wanted to learn. But I do this in order to try and save my twins' lives and to help other people who suffer from progressive neurological diseases. I hope that what I am learning and what I am sharing on Wikipedia might help someone else.

My husband and I have also developed a revolutionary new drug called cyclodextrin for our twins. My twins were the first in the world to received cyclodextrin into their brains under the first compassionate use protocol that was approved by the FDA. Our story and personal journal to develop this new drug has been featured in the Wall Street Journal (http://projects.wsj.com/trials/) and on many other news outlets.

Before becoming a full time Mom and self described "citizen scientist," I spent my career in public relations working at companies like Netscape and co-founding Sparkpr, a global public relations agency with offices in San Francisco and New York. I joined the Advisory Board of the Global Genes Project, a leading rare disease patient advocacy organization. I am spending more time becoming an healthcare advocate for the millions of people suffering from over 7,000 different types of rare and genetic diseases.

I love the power of Wikipedia -- I think it's the most amazing site on the Internet!

Chris