The mission of the JLK Sanfilippo Research Foundation is to create awareness of this very rare genetic syndrome and to raise funds to help support private companies and non-profit organizations in their quest to develop therapies that will combat Sanfilippo Syndrome.   
We became a non-profit in August of 2006. 

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Sanfilippo Research Foundation

Paul and Nancy Burke
501 (c) 3 Non-Profit Foundation  

Sanfilippo Syndrome is a progressive and degenerative storage disorder. Children with Sanfilippo are missing an essential enzyme. Without the enzyme the body cannot break down mucopolysaccharides, and stores them in every cell in the body, including the brain. As the storage builds up, skills are lost. Children who sang, no longer speak. Those who ran are in wheelchairs. Finally, the body just gets too weak. There is no cure or treatment. The average lifespan is in the 20’s. 

Be One in a Million for JLK

We have started a campaign on
We are trying to raise $1,000,000.00.

Part of it will be used to continue funding research projects and part to be used to fund a Natural History Study for Sanfilippo Type C.

We need your help and can't do it without you.
Please click the link below: 

Give as little as a dollar or more if you can afford it and please email, tweet and call your friends to donate to help us save our children and others.
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WCVB VideoThree daughters with Sanfilippo type C
                 Winter's Co.
From the left- Joe, Matt, Bill (back row) Paul, Bill and Laura.
Even with high winds and freezing temperatures many runners came out to support JLK Sanfilippo Research Foundation.  Thanks to all.
An Ras Mor Road Race After Party