Sanfilippo Research Foundation
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Mission Statement
Sanfilippo Research Foundation, Inc., dba Ben's Dream, is a 501(c)(3) public non-profit rare disease research organization. The foundation is dedicated to promoting awareness and raising funds to support research aimed at finding a cure for all types of Sanfilippo Syndrome (MPS III), a rare and fatal genetic disorder.
About This Cause
Jennifer and Stuart Siedman formed Ben's Dream in honor of their son Benjamin's 5th birthday after working cooperatively for two years with the Children's Medical Research Foundation (CMRF/Cure Kirby), another afflicted family's foundation in Illinois. Sadly Benjamin passed away in 2014, but the foundation continues its mission and BIG Ben will forever be our Chief Inspiration Officer. SRF/Ben's Dream supports research worldwide in academic and other institutions. Clinical trials are underway for foundation-funded gene therapy research through Nationwide Children's Hospital and Abeona Therapeutics for Sanfilippo Syndrome Type A with clinical trials for Type B expected to start in 2H17. SRF/Ben's Dream is a co-creator of ConnectMPS, an MPS and ML disease registry on the AltaVoice (formally PatientCrossroads) platform. This global registry was developed to facilitate connections between patients, researchers and industry to advance treatments for MPS and ML diseases: https://ConnectMPS.org