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Race For Adam Liberty to Freedom Run

Win the Race For Adam
Liberty to Freedom Run

4 mile run + 2 mile walk + Kids Fun Run

Date: May 13, 2017

4-Mile Run
Start Time: 10:00 AM
Register @ 9 am Liberty HS Track
 
2-Mile Walk
Start Time: 10:30 AM 
Register @ 10:00 am Freedom HS
 
Cost:
$10 for any BASD member
$10 Kids’ Fun Run
$10 2-Mile Walk – Community
$20 4-Mile Run - Community
 
Penn Vet Researchers Identify Effective Treatment

Penn Vet Researchers Identify Effective Treatment for Niemann Pick Type C
UPenn - 2/25/15

Niemann Pick Disease type C, or NPC, is a disease most people have never heard of, affecting just one person in 150,000. Yet the disease is a devastating one. Frequently diagnosed in children in their elementary school years, sufferers usually die by the time they’re 20. The disease is sometimes referred to as “childhood Alzheimer’s” because of the progressive mental and physical decline seen in the children it afflicts.

There is no specific, FDA-approved treatment for NPC, only drugs to treat the symptoms. That is now changing.

A study coming out in Science Translational Medicine and led by University of Pennsylvania School of Veterinary Medicine researchers has shown that cats with NPC — which mirrors the human version of the disease — show vast improvements when treated with a compound called cyclodextrin. While NPC typically results in inexorable neurological decline, administering cyclodextrin into the fluid around the cats’ brains largely halted the progression of disease.

This study showed that the treatment was safe enough to begin a clinical trial in children, which launched last year.

Click here to continue reading . . .

Golf Tournament Committee Members Wanted

Attention golf enthusiasts!! We are looking for a few very very motivated individuals that would like to be part of the Golf Ttournament Committee. We will meet once a month for approximately an hour to make this event special.  Contact Us if you are interested!

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Adam's Today Show Appearance

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Support Of Accelerated Research for Niemann-Pick C, or SOAR-NPC, was created by parents and scientists as a grassroots response to the absence of treatments for this terminal disease.

The number one goal of SOAR-NPC is to work as quickly as possible to find evidence-based treatments and ultimately a cure for Niemann-Pick Type C disease, a rare neurological illness.

SOAR scientists are internationally recognized in NPC research from institutions including Washington University in St. Louis, Albert Einstein College of Medicine, and University of Pennsylvania.  SOAR family foundations are dedicated to raising money and awareness to combat this deadly disease.

 
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