Jennifer SiedmanOutreach Manager; President at Courageous Parents Network; Ben’s Dream: The Sanfilippo Research Foundation
Jennifer Siedman is a development and non-profit professional with over 20 years of experience. Her commitment to advocating for children with special needs and for vulnerable communities is shaped by her life experiences. Shortly after her second child, Ben, was diagnosed with Sanfilippo Syndrome Jennifer and her husband formed Ben’s Dream: the Sanfilippo Research Foundation. As president of the foundation, she has worked with researchers, patient advocacy groups and foundations worldwide to fund and advance gene therapies now in clinical trials in the U.S., Spain and Australia. Sadly, these efforts did not come to fruition in time for Ben, who passed away in 2014.
Jennifer is the Outreach Manager for Courageous Parents Network (CPN), a web/mobile platform, whose mission is to empower, support and orient parents and providers caring for children with life-limiting illness. In her role she focuses on bringing CPN’s resources to patient disease groups, hospitals and pediatric providers. These resources include a library of over 500 parent and provider interviews, blogs and guides. She also manages CPN’s social media presence.
In addition to her work at CPN, Jennifer provides consulting services to non-profits that strengthen their boards, produce impactful events and create robust, sustainable fundraising results. Past clients include the Boston Children’s Museum, National Tay-Sachs and Allied Diseases, Learning Center for the Deaf and the Children’s Trust.
She has held Executive and Development Director roles at Lovelane Special Needs Horseback Riding Program, Youk’s Kids and the Wellesley Free Library Foundation.
Global Genes RARE Champion of Hope and the Boston Celtics Heroes Among Us awards have recognized her for her contributions. She has spoken about the patient journey at Massachusetts General Hospital, Nationwide Children’s Hospital, New England Regional Genetics Group, UMass Boston Medical Center as well as at a number of biotech companies and patient disease conferences.