The Jansen de Vries Syndrome (JdVS) Foundation is a nonprofit, tax-exempt organization as defined in section 501(c)(3) of the Internal Revenue Code and, as such, contributions to JdVS Foundation are tax-deductible. Donations will go towards the mission of providing support and a sense of community to families touched by a JdVS diagnosis. We are focused on providing education and resources to both families and medical professionals. Our goal is to raise awareness about this rare genetic condition and unite families, researchers, and medical professionals through the facilitation of a patient registry program. Through fundraising and grant efforts, we will work to provide researchers the resources necessary to gain a better understanding of the PPM1D mutation .