Group Overview
- Website:
- http://addiandcassi.com/
- Description:
- Who would ever think that cholesterol would kill children? Well, that is exactly
what is happening to us – right now, every moment of everyday. Cholesterol is
building up inside each cell of our bodies and hurting our brains, livers and
spleens. Our names are Addison and Cassidy Hempel. We’re (almost) 4 year old
identical twins who were diagnosed on October 17th, 2007, as having a rare and lethal
disease called Niemann Pick Type C (NP-C).
We were told that the chance of identical twins being born with NP-C is about 1 in 43
million and we think we are the only identical twins in the world with this rare
disease. Despite how rare NP-C is, we believe we might hold the keys to
understanding cholesterol metabolism at the genome level which ultimately could help
you and your family in the future.
Determined To Find A Cure
We don’t yet understand why God chose for us to be born with NP-C disease but we
are determined to find a cure that we hope will lead to medical breakthroughs in a
number of areas. If researchers and scientists can discover why this nasty
cholesterol is building up inside our cells and destroying them, they may be able to
make major breakthroughs for millions of people who suffer from Alzheimer’s, heart
attacks and strokes. We need help from people around the world to get the word out
about Niemann Pick Type C and to help us beat this devastating childhood illness.
Cholesterol Metabolism Failure Linked To Major Diseases
Today, we are vibrant young twins who love to sing and play. Tomorrow, we are faced
with losing critical functions including the ability to walk, talk and eat. Some
doctor’s refer to Niemann Pick Type C as the “Childhood Alzheimer’s” because
both Alzheimer’s and NP-C are progressive neurological diseases with similar
effects on the brain. Some studies comparing the two diseases discovered that
Alzheimer’s could be tied to a failure in cholesterol metabolism – the very
process that is a key component in NP-C. We all know that cholesterol issues are the
main cause of heart disease around the world.
Our parents are on a quest to find therapies and treatments in the near term and are
working towards a progressive new treatment strategy for us. Please take some time
to subscribe to our mailing list, volunteer to join the CureCaps hat making effort,
read about ways you can support us or make a financial contribution to help us find
new therapies and ultimately a cure.
With everyone’s help, we can conquer the cholesterol mystery together! And one
final thing. We really need your wishes for a cure.
Latest Discussion Comments
"The holidays are a time for giving, family, friends and love. Please send Addi and Cassi your love ..."
Topic: Addi and Cassi's Wish List
My Calendar
Upcoming Events
- Meeting of Parents, North California May 17, 2007
- Let's Talk:Child Progression August 29, 2007
- Meeting of Parents, South California September 6, 2007
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