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?
    Kudos!

  2. TALHAOUI AICHA says:

    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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