Jeff Leider

Jeff Leider’s passion for advocacy began when his two sons were diagnosed with MPSII/Hunters Syndrome. Since diagnosis, he has worked tirelessly not only for his children but all children with Rare Diseases, creating both Jason & Justin’s Journey for his sons and the Let Them Be Little X2 Foundation for rare disease families. Mr. Leider has been on numerous television segments and countless newspaper articles with the hopes of educating people about the Rare Disease community. Visiting the NJ State Capital and Washington, DC, Jeff has made strides in the MPS World. With his support, The Let Them Be Little Act, providing testing of MPSI and MPSII in newborns, was signed into NJ law. Mr. Leider was integral in persuading the FDA and Shire Pharmaceuticals to open a clinical trial, giving nine MPSII children a chance to receive experimental drugs to halt disease progression. After implementation, Jeff became a patient representative for the FDA. Jeff has been a guest speaker at the Capital and continues to moderate conferences throughout the country. He serves as Board of Director of Rare New Jersey, The Hunters Syndrome Research Coalition, member of MPS Society and many local organizations. In 2014, Mr. Leider was awarded The Abby for Advocacy-State Level at the Rare Voice Awards in Washington, DC.