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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JLK

Sanfilippo Research Foundation

Paul and Nancy Burke
www.jlksanfilippofoundation.com
burke@jlksanfilippofoundation.com
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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Video:
WCVB VideoThree daughters with Sanfilippo type C
UPDATE:
JLK Sanfilippo Research Foundation

Update for 2016:

Dear Friends:
Nancy and I want to thank you for all the well wishes, prayers and generous donations. Your generosity has enabled us to fund research that may lead to, if not a cure, at least a treatment for Sanfilippo IIIc. This gives us hope as we go through the day to day of caring for our girls.From 2014

Over the past few years your donations have enabled us to gift $149,500 to CHU Saint Justine in Montreal, Canada. The research projects we have funded are: “Pathophysiology of Synapse Function in Sanfilippo Disease” , February 2012 $40,000 – March 2013 $40,000 and June 2014 $20,000. We also provided funds for “Assessment of the Efficacy of Long Term Intracerebral AAV-hHGSNAT Delivery in MPSIIIC mice”, October 2011 $20,000. And October 2010 $20,000 for MPS IIIc as a protein folding disease. The last two projects helped to inform the synaptic research we are engaged in now. Just recently we gifted another $9,500 to CHU Saint Justine for the Synaptic research and we will gift another $22,800 in 2017.

We have never used the foundations funds for anything else other than to fund MPS IIIC research. This is a fact of which both Nancy and I are proud. However, as we enter a new phase in synaptic research we feel it necessary to draw up a gift agreement between Chu Saint Justine and JLK Sanfilippo Research Foundation. The agreement will protect both parties’ rights and obligations and decisions about the intellectual property developed. For this I need to pay an attorney to draw up the agreement and will need to use Foundation funds. As in the past and as we go forward, our aim is not to use the Foundation funds in this way.

Jillian 29, Lindsey 26, and Kelsey 23, given their prognosis, have been lucky to be able to participate in life as fully and as passionately as they have. We have been lucky; as the progression of the disease has been slow we have enjoyed their small victories as they go through life. Unfortunately, in the past few years we have been witness to the steady decline that this storage disease causes.  

This past year was particularly difficult for Jillian and Lindsey. They both had to be cared for at home for extended periods of time. Lindsey first during the beginning of the year and then Jill, who was home for almost six months. Because they don’t speak it was almost impossible to discern the cause and nature of their illness. Fortunately, each was able to rebound and are now on firmer footing.

Nancy and I want to wish you all a Merry Christmas and a Happy New Year.


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
20th Annual  AN RAS MOR  5 K Road Race

Sunday, March 26, 2017
Start Time 9:30
$30 Early Fee until Jan. 1
$33 Regular Fee Jan. 2 -Feb. 28
$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.
EVENT:
Amazon 

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.