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.


Board Member

Alyssa and Elihu have two children, Peggy and Solomon. As the parent of a CSS-child, she is excited to contribute to the CSS Foundation. Alyssa works in precision agriculture, and enjoys spending her "spare" time gardening with her family.


Board Member

Ryan is the proud father of three amazing children.  His youngest son, Charlie, has Coffin-Siris Syndrome caused by a variant in the DPF2 gene.  Ryan practices intellectual property law in the Hartford, Connecticut area.


Board Member

Benji and his Wife Sarah have two girls. Na’amah and her little sister Ellah, who has ARID1A Mosaic Pattern. Benji is a Commercial Real Estate Broker in Detroit and loves traveling the country seeing his favorite bands and showing his kids local landmarks.


Board Member

Shauna has a three year old son with CSS (ARID1A variant). She works in healthcare operations. Shauna also enjoys books, exercise, and time spent with family.


Board Member

Kelley and her husband Bryant are the parents of 3 energetic boys and a foster daughter. Tyson, their youngest, was diagnosed with CSS ARID1B variant at age 7. Kelley is a trade show sales manager in Westport, CT. She is a huge Boston sports fan and enjoys traveling.


Medical Advisor

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 advisor to our board of directors.


Conference Advisor

Sarah is an advisor to the Foundation and is responsible for supporting the 2020 Conference.


SAAB Liason

Carissa is an advisor to the Foundation and is responsible for coordinating the Foundation and the Self Advocate Advisory Board. She also leads the "Emily's Fund" Grant program.


Medical Support Advisor

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.


The Self-Advocacy Advisory Board is a place for members of our community with CSS (18+) to serve as leaders within our Foundation and community. The role will be included in Board meetings (if desired), and will offer a platform to advise and council the Foundation's stratagy and planning, ideas for action or involvement, and promote inclusion, opportunity, and leadership for adults with CSS. 


If you are interested in learning more about the Self-Advocacy Advisory Board or would like any more information, please contact Eddie or Katie via Facebook, or Carissa at


Self Advocate Advisor

Eddie will be 24 in March 2020 and has an ARID1B variant. Eddie lives in Massachusetts and is currently studying to get his Associates Degree in Hospitality at Cape Cod Community College. He works in the kitchen at White Cliffs Country Club doing a variety of jobs from dishwasher to prepping food. In his spare time he loves to do jigsaw puzzles, word searches and play video games. Eddie’s future goal is to get his driver’s license! Eddie is eager to join the CSS Foundation team and help with being a welcoming face for our community. He'll also be helping with Foundation Facebook posts and planning a Young Adult event at our summer conference! 


Self Advocate Advisor

Katie is 20 years old and lives in Cedarburg, Wisconsin. She currently attends the Reach Transition program through Cedarburg High School. Next fall, she hopes to attend Bethesda College through Concordia University. She loves meeting new people. Katie is excited to serve on the CSS board because she thrives on bringing joy to others. Katie’s family includes her parents, Mary Jo and Luca, and her brother, Nick, and sister, Julia.

The CSS Foundation board and advisor team 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

©2020 by Coffin-Siris Syndrome Foundation