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

To donate by check:
Make the check payable to
​JLK Sanfilippo Research Foundation   and Mail to

                                                    Go To the Research Button for the latest update on the research.

JLK Sanfilippo Research Foundation
P.O. Box 564
Belmont, MA 02478
21st Annual  AN RAS MOR  5 K Road Race

Sunday, March 25, 2018
Start Time 9:30
Register Now!
$40 March 1 to Race Day if Available

The Somerville Road Runners have been strong and loyal supporters of our foundation.  A portion of the entry fee will go to JLK to fund research.  You are also provided with an opportunity to make a personal donation to our cause when you register.

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.
March 25, 2018; the start of the An Ras Mor - a   5K  race through Cambridge. 

The Somerville Road Runners sponsor the race and donate part of the proceeds to the JLK Sanfilippo Research Foundation.   

Thank you Somerville Road runners.
Three elite runners from the An Ras Mor