Chris Hempel
RareMom and also Co-Founder, Spark Public Relations
Reno, NV
About me
My seven year old identical twin daughters, Addi and Cassi, have an ultra rare a fatal cholesterol storage disorder called Niemann Pick Type C disease. It is often referred to as the "childhood Alzheimer's." Children born with NPC disease inherit double genetic mutations on a critical cholesterol gene located on Chromosome 18. While NPC is an ultra rare disease, every person in the world is born with the NPC gene and this gene regulates human cholesterol metabolism at the cellular level. Many doctors believe NPC and Alzheimer’s could be connected due to similarities in cholesterol and lipid malfunctions while HIV-AIDS researchers have discovered that the NPC gene and cholesterol helps the deadly virus replicate in the body. What scientists learn about children like Addi and Cassi’s might someday help millions of people with cholesterol-related diseases, including heart disease and stroke as well as deadly viruses. www.addiandcassi.com
Why I participate in Medpedia
I am a health "advocist" for my children .... advocate + activist = advocist! I am a big fan of the Children's Rare Disease Network and Global Genes Project initiatives that raise awareness of rare diseases that impact millions of children.
Contact
Education
Universities
University of California, Berkeley
Disclosure or Conflict of Interest
Chris Hempel has nothing to disclose
Tokens of Appreciation
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