Benjamin Siedman has 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 faces. 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 so Benjamin and his friends can realize their dreams.

Explore our website to learn more about Benjamin, Sanfilippo Syndrome, the Foundation, our efforts and how you can help.

Sanfilippo Syndrome Type A & B
Natural History Study Grant Announcement




The Sanfilippo Research Foundation, The Children's Medical Research Foundation & The Sanfilippo Children's Research Foundation have issued $550,000 to investigators at
Nationwide Children's Hospital that will lead to
human clinical trials targeted for 2014.


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Last modified: May 7, 2013.



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