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Haley's Wish From Make-A-Wish |
| National Niemann Pick Disease Foundation |
| haleymae@hargray.com |
 Haley In The News! |
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"Hugs for Haley"
Paul Floeckher
Article From WSAV News 3
Monday, September 29, 2003
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"October is Niemann Pick Awareness Month" Low Country Now Carolina Morning News
Click
Here To Read |
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A big Thanks to Carrie, Principal Bill Parsons, and the Interact Club for all their help and support! |
Thanks For Visiting!
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Hugs For Haley |
Hugs For Haley was created to support Haley, provide a fundraiser for the National Niemann Pick Disease Foundation, and to promote awareness of Niemann Pick Disease. Haley is a very sweet 12 year old who has Niemann Pick Type C.
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Keep a look out for this new Public Service Announcement on NPD. Thanks to James Brown for helping to raise awareness! For more information visit James Brown's website. |
October Was Niemann
Pick Awareness Month
Thanks For Helping Us Raise
Over $7,000
For the National Niemann-Pick
Disease Foundation!
Thank
you to everyone that has helped out in so many ways. 80
riders participated in the Poker Run, and many more from the community
joined in to enjoy the Oyster Roast. The Putt Putt event was a great
opportunity to get the kids involved and have fun while promoting Niemann-Pick
Disease Awareness. Thank you all for making it possible.
Below is a past message from Ruth and Haley about the Poker Run.
Update on our
National Niemann-Pick Awareness Month
The Poker Run was a great success, with 80 riders participating and at
least 100 more people joined us for the Oyster Roast. The food was donated
by many local people and businesses and the music was awesome too. I think
everyone had a really great time. Haley was smiles all day long. Many
businesses and individuals donated items for our Live Auction. The auction
was a big hit and I think everyone enjoyed that a lot. A HUGE Thank you
goes out to everyone that helped make it such a wonderful day!
We are also looking forward to our Putt Putt Golf tournament this weekend.
I have always wanted to do a fundraiser with kids involved, so I thought
this would great fun.
you can still be involved by cheering on the golfers and maybe purchasing a
few raffle tickets.
I can't wait until the end of the month when I can post the total amount of
money we have raised for the National Niemann-Pick Disease Foundation. This
is an exciting time for us and we thank you all again for your love and
support.
Hope to see you Saturday,
-Ruth
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Niemann-Pick Disease |
Niemann-Pick Type C Disease (NP-C) is a genetic pediatric neurodegenerative
disorder which causes progressive deterioration of the nervous system. It
usually affects children of school age by interfering with their ability to
metabolize cholesterol. Consequently, large amounts of cholesterol
accumulate within the liver, spleen, and brain. This metabolic disorder
leads to a series of neurological problems that are ultimately fatal. Adult
onset may also occur.
To learn more about Niemann Pick
Disease or to see what is going on in the world of research or families with
NPC visit these links.
National Niemann Pick Disease Foundation
www.nnpdf.org
Ara Parseghian Medical Research Foundation
http://www.parseghian.org/apmrfweb/
Jim Lambright Niemann Pick Foundation
http://www.lambrightfoundation.com/
