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. 

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WCVB VideoThree daughters with Sanfilippo type C
JLK Sanfilippo Research Foundation
P.O. Box 564
Belmont, MA 02478

When shopping on Amazon, go to Amazon smile and type in JLK Sanfilippo Research Foundation as your selected charity.  Amazon will donate a portion of your purchase to our foundation.
Scientific Agenda:

Our consortium H.A.N.D.S. is proud to have funded the science behind these talks:

August 2nd, 1:30 to 1:45 Synaptic Dysfunction in Sanfilippo Type C Syndrome. Speaker: Camila De Britto Para De Argagao, Canada

August 3rd, 11:15 to 11:30 am Towards Chaperone Therapy for Mucopolysaccharidosis Type IIlC. Speaker: Xuefang Pan, PhD, Canada

August 4th, 9 to 9:15 am A novel adeno-associated virus capsid with enhanced neurotropism for the treatment of Mucopolysacchridosis IIIC. Speaker: Brian Bigger, PhD, UK
15th International Symposium on MPS and Related Diseases August 2 - 4 San Diego California.
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