My Nonprofit Reviews

Our son was diagnosed with Bohring Opitz Syndrome, a very rare genetic diagnosis, in 2014 at age 11. There are only about 100 children in the world with this syndrome so it is very difficult to find information, connect with other families, and have scientists take enough notice to study our syndrome, both for those currently affected and for future diagnoses. The ASXL Rare Research Endowment Foundation (ARRE) has been an incredible resource for our son and our entire family. Being able to attend conferences, connect with other parents, and learn from some of the experts from around the world has impacted our ability to care for our son and his sisters. I can't wait to see what they bring to us next!!