The University of Chicago Genetic Services provides testing for microcephalic primordial dwarfism. Here is an article by The Potentials Foundation president, Bob Walker, describing his organizations mandate and mission to support families with these conditions.
The Potentials Foundation is a non-profit, 501(c)(3) organization dedicated to supporting families affected by Majewski (microcephalic) osteodysplastic primordial dwarfism Type II, Type I/III, Meier-Gorlin, and remarkably similar but not otherwise specified microcephalic primordial dwarfism (MPD). Our mission is to enrich the lives of individuals with these types of primordial dwarfism by facilitating and organizing opportunities for families to meet, providing information relating to known health concerns and specialty care, and furthering research efforts.
Elizabeth Hale founded the Potentials Foundation in 2007 after her daughter Chloe was diagnosed with MOPDII. Elizabeth soon realized that there was no organization that directly served the Primordial Dwarfism community. Elizabeth’s hope was to connect with other families of similar children and facilitate opportunities for them to meet. Since that time we have grown to an organization that serves over 75 families around the world.
Many of our registrants meet annually at the Little People of America’s (LPA) annual summer conference. At the annual LPA conference the foundation host medical workshops and social get togethers. We currently sponsor a gene research project and a primordial dwarfism medical registry. From this effort we have discovered a number of genes related to primordial dwarfism and have facilitated the publishing of numerous research articles.
We support our mission through annual fundraising activities and the generous support of our donors. Our organization is composed of a group of voluntary, non-compensated friends and families. All donations go directly to supporting our mission. Our website is www.potentialsfoundation.org