My Nonprofit Reviews

This organization has helped my family and many other to better undersand this rare syndome. Being no more than 400 cases in the world this organization has made a difference in our kids through research, guidance and sharing invaluable information and has also been the "guiding star" to us, parents of this angels by feeling part of a larger family and providing us moral support, genuine friendship and important tools to be more prepared to face our kids needs and challenges.

More Feedback