©2019 by Coffin-Siris Syndrome Foundation

BOARD OF DIRECTORS AND ADVISERS

SHEA ROBINSON

Chairman, Founder

Shea is married and the father of three boys. Caleb, the oldest, has an ARID1B variant. They received his CSS diagnosis when Caleb was three. Shea is an engineer in product design in Seattle.

MARIA RIOJAS

Board Member

BRION JOHANSEN

Board Member

Brion is married with 2 children. Carter – his youngest – has an ARID1B variant. In his spare time, Brion enjoys riding motorcycles, UTV’s, and all things powersports related. His true passion, however, is his family. Together, they make their home in Salt Lake City, UT.

YARIXZA CAMACHO

Board Member

Yarixza Camacho is from Pasadena, Texas. Mother of 3 children, Alfredo Jr., Noe, Yarixza Reyna 15. Yarixza Reyna was diagnosed at the age of 9 yrs old with CSS with ARID1B variant. Yarixza is an owner of an accounting business.

BENJI ROSENZWEIG

Board Member

DR. SAMANTHA VERGANO

Medical Adviser

Dr. Vergano is the Division Director of Medical Genetics and Metabolism at Children's Hospital of The King's Daughters in Norfolk, VA and an Associate Professor of Pediatrics at Eastern Virginia Medical School. Dr. Vergano also runs the the CSS clinic out of CHKD and serves as an adviser to our board of directors.

The CSS Foundation board is made up of volunteers who invest their personal time to enable the Foundation to fulfill its mission. We are always on the lookout for passionate, resourceful people to help out, whether that is in the capacity of a formal board position or not. If you would like to learn more about how you can help or are interested in being on the board, please email Foundation@coffinsiris.org