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Dementia is something that is usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia. (Hinton et al, 2005)
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  • Rare Disease Day 2012 – Spread This Call To Action To Make A Difference!
    World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by […]
  • Meet The Children Who Are Resistant To Contracting Ebola, HIV-AIDS
    My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood Alzheimer’s”) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that […]

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  • 18May

    A good start:: Reversal Of Alzheimer’s Symptoms Within Minutes In Human Study

    Learn about Niemann-Pick Type C

  • 11May

    This is huge because testing for Lysosomal Storage Disease’s (Niemann-Pick A,B, & C,Krabbe, Pompe, Gaucher, and Fabry) can help immensely for families and eliminate some struggles with “What is wrong with my child!”.  Even though many don’t have a effective treatment or cure, sometimes early intervention in the future could lead to drastic improvements in a child’s life if diagnosed.  What if knowing at birth something simple could be done to help them live a normal life and drastically give them a longer life until a treatment or cure comes about????

    Please visit the article here: Mo. Votes to Add 5 Diseases to Newborn Screenings


    Learn about Niemann-Pick Type C

  • 10May

    Message from one of the Mother’s who have twin girls with Niemann Pick Type C.  Please help by voting!  Thank you!

    Dear Friends:

    We have a very big meeting with Babies R Us next week in New Jersey to see if they will carry the BellyLaf product line.   This is our second meeting.   10% of BellyLaf’s profits go into research into Rare Diseases. Please help us out and vote “Use It” for our product on the Parenting Magazine Poll.

    We have a competitor who keeps voting no for our product which can hurt our chances of getting picked up.

    Please go to the following poll:  http://www.parenting.com/Common/commonPoll.jsp?id=293.

    Vote USE IT!

    Thanks so much for your help!  We’ll let you know if we get picked up.

    Best,

    Chris


    Learn about Niemann-Pick Type C

  • 04May

    Frank Cazella & Andrew Misak are owners of Pieroguys Pierogies, LLC.  They helped sponsor one of events in Orlando, FL back in March 2009 for the Niemann-Pick Children’s Fund, Inc.  They make some killer food.  Check out what they are all about!  I am hungry just thinking about them!

    What are Pierogies?

    A Pierogi is a type of boiled dumpling made
    from unleavened dough and stuffed with various ingredients. Pierogi are usually small enough to
    be served several at a time. Though this
    food has strong ties to Slavic culture, similar foods
    occur in many cultures across Europe and Asia.

    The outside of a pierogi is a type of dough mixed
    from flour, warm water, and beaten egg.

    The inside filling is prepared many different
    ways depending on your taste. They can be stuffed
    with sauerkraut, cheese, mashed potatoes, cabbage,
    onion, various types of meat, vegetables or fruit.

    Then the ends of each pierogi are pinched and
    together the batch is put into a boiling pot of water,
    fried in butter, or baked in the oven with other garnish.

    Pieroguy Pierogies, LLC

    Pieroguy Pierogies, LLC

    Learn more about Pierogies here

    Pieroguy Pierogies, LLC

    sales@pieroguys.com



    Learn about Niemann-Pick Type C

   

Recent Comments

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