WHAT WE FIGHT FOR
Our Mission and Vision
The DESSH Foundation was established to raise awareness of DeSanto-Shinawi Syndrome (DESSH) among the medical profession and the general public, to advance research and education related to DESSH, and to provide a support-community for patients and families challenged by DESSH.
We aim to support patients challenged by DeSanto-Shinawi Syndrome by advancing research in pursuit of a cure through awareness and fundraising.
OUR BOARD OF DIRECTORS
President and Co-Founder
With a keen belief in the power of charity and volunteer work, Max Johnson is committed to changing the world. There really couldn’t be a more dedicated Grant Manager, and we’re so happy to have Max Johnson as part of the DeSanto Shinawi Syndrome team.
Vice President and Co-Founder
Joseph is the father of Leo who was diagnosed with DESSH in 2016, the father of Lucia, and the husband of Caitlin. He holds degrees in education from New York University, Rider University, and The Massachusetts College of Liberal Arts. In 2021, he received his doctorate at The University of Mary. Joseph is the Superintendent of Schools for the Hopatcong Borough School District in New Jersey.
Personable and detail-oriented, Jesse Neimus is beloved by both our donors and our program managers. We are so lucky to have such a wonderful Program Coordinator and person on our staff.