I am Nicole Lenzen. I am the mother of a little boy with an ultra rare genetic syndrome, Pitt Hopkins Syndrome. When he was diagnosed three years ago, there were less than 200 worldwide with the diagnosis. To date, the families of over 500 children have contacted our foundation. Today, September 18th, is our third annual awareness day. We are hoping to spread the word about the syndrome so families looking for their answer might finally find it by seeing the faces of our children.

Pitt Hopkins Research Foundation

Thank you!