USA Today Spotlights Rare Family Fighting For FDA Approval To Treat Dying Twins

Advocating for your children can and does make a difference!

On March 6, 2012, USA Today published an article spotlighting a brave family with twin girls suffering a rare and fatal genetic disease.  Niemann Pick Type C disease, often called childhood Alzheimer’s, has brought the Hempel family through rigorous challenges and constant battles in an effort to keep their children alive.

Yet, an approval with a drug called cyclodextrin from the FDA brings encouragement and hope to the Niemann-Pick Type C  and rare disease communities.

Follow this link to read more:

USA Today – Addison and Cassidy Hempel


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Global Genes Comments

  1. First off I want to say excellent blog! I had a quick question that I’d like to ask if you don’t mind.
    I was curious to know how you center yourself and clear your mind prior
    to writing. I’ve had a difficult time clearing my thoughts in getting
    my ideas out there. I do enjoy writing but it just seems like
    the first 10 to 15 minutes are usually wasted just trying to figure out how to begin. Any recommendations or hints?


    Bonjours j ai mon petie frere de 1ans est 7mois qui a aussi la maladie nieman pick c type 2 on habite en belgique, je vous demande de nous aider, de nous donner des informations sur le medicament cyclodextrine la FDA et des conseils medicales comme c est une maladie rare on est un peu perdu, on sais pas quoi faire aider nous si vous plais.

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