Benjamin Siedman had Sanfilippo Syndrome, a rare & fatal inherited genetic disorder. Ben and thousands of children like him have a life expectancy between 12 and 20 years. There is no treatment, no cure ... Only hope.
Doctors can do little for Sanfilippo's symptoms and nothing to stop the catastrophic regression Ben's friends face. That is why we created the Sanfilippo Research Foundation.
Our mission is to promote awareness and raise funds to support research aimed at finding a cure for all types of Sanfilippo Syndrome.
We are in the process of updating our website - please visit our Facebook page for the latest information.
In memory of Ben's Nana, Marie Siedman: 8/10/1931 - 6/29/2018
(Donation in lieu of flowers)
Our sponsored research at Nationwide Children's Hospital:
MPS III type A is now in Phase I/II gene therapy clinical trial (ClinicalTrials.gov link)
*NEW* MPS III type B is now in a Phase I/II gene therapy clinical trial (ClinicalTrials.gov link)
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Last modified: November 2, 2017.
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