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BOARD OF DIRECTORS AND ADVISORS

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CARISSA ROBINSON

Chair

Carissa lives in Seattle with her husband and 3 boys. Caleb, her oldest, has an ARID1B mutation and has been her greatest teacher and driving force for her passion towards equity, belonging, and inclusion. Carissa leads the "Emily's Fund" Grant program, the Self Advocate Advisory Board, and mentors and advises families around IDEA and the IEP process. 

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KELLEY ABBOTT

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.

Mario

MARIO UZETA

Board Member

Mario and his wife Gisselle have a young son, Sebastian, with ARID1B.  They live in Southern California.  Prior to being a full time caregiver for his son Mario was a manager in the financial sector with over 20 years experience.  In his spare time he enjoys BBQing, The Broncos, and building computers and special needs mobility equipment.

Gaylen

GAYLEN MOHRE

Board Member

Gaylen and her husband Nate are the proud parents  of two children. Her daughter was diagnosed with CSS - ARID 1B in 2021. Gaylen is thankful for the community that the CSS Foundation has nurtured. She is hoping to contribute to, and learn from, the CSS community.   Gaylen is a school social worker with the NYC Department of Education. She lives with her family in Queens, NY. 

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KRISTEN MCGRAW

Board Member

Kristen lives in New Jersey with her husband and two boys. Her younger son was diagnosed with agenesis of the corpus callosum in utero and CSS - ARID1B in 2021. Kristen has found an invaluable support system and wisdom within the CSS community.  She is excited to get more involved and contribute to the great work being done to support fellow CSS families and raise awareness. Kristen has worked in finance and supply chain for the last 20 years. In her spare time, she enjoys distance running and reading.

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BRION JOHANSEN

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.

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SHEA ROBINSON

Advisor, 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.

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AMANDA COLE

Board Member

Amanda and her husband have two children. Her youngest, Nora, was diagnosed with CSS –ARID1A in January 2021. She is excited to give back to the community that has given so much help and guidance. She has a background in Early Childhood Education but stays at home. She enjoys being heavily involved in their community and homeschooling her oldest. Any spare time found is spent watching comfort
shows, crafting, and exploring.

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BECKY DUBAY

Board Member

Becky lives with her family in Fredericton, New Brunswick, Canada. Her and her husband Matt have 3 perfect children. They waited 5 and a half years to get a diagnosis for their middle child. The wait was worth every second for how much it changed their life for the better. Last year, they met their CSS family at the conference, and felt they had found “their home”. Their daughter is the light of every room, and they feel so lucky to be her parents, and part of this community. Becky is a master’s level Social Worker. She is passionate about her career, and about helping people. Becky works part time as a counselor, so that she can be free to keep up with all the things that come with having a child with CSS.

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DR. SAMANTHA VERGANO

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DR. GIJS SANTEN

Medical Advisor

Dr. Vergano  serves as a medical advisor to the Coffin-Siris Syndrome Foundation. She is the Medical Director of Outpatient Services in the division of Genetic Medicine at Seattle Children’s Hospital, and a Professor of Pediatrics at the University of Washington. Dr. Vergano developed an interest in CSS during her fellowship in medical

genetics at the Children’s Hospital of Philadelphia.  In 2015, she launched the first international registry of CSS patients. Dr. Vergano formerly served as the Division Director of Medical Genetics and Metabolism at The Children’s Hospital of The King's

 Daughters in Norfolk, VA. She is excited to continue to build the registry at Seattle Children’s and see individuals with CSS in clinic.

Medical Advisor

Dr. Santen is a clinical geneticist at Leiden University Medical Center in Leiden, Netherlands.
“My inspiration flows from the patients I see and the questions they have: it is a joy to continuously work on improving our ability to diagnose rare diseases, increasing the information we can give patients, and starting the search for treatment options. My group focuses on Coffin-Siris syndrome as a model for rare disorders, and on broadening the application and increasing the impact of extensive genetic testing, for example, during pregnancy.”

SELF-ADVOCATE ADVISORY BOARD

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 strategy 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 an existing Self Advocate Advisor  via Facebook or Carissa at Carissa@coffinsiris.org.

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EDDIE GUBBINS

Self Advocate Advisor

Eddie will be 26 in March 2022 and has an ARID1B variant. Eddie lives in Massachusetts with his family 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. Eddie received the 2020 Student Chef of the year Award from the local chapter of the American Culinary Federation. In August 2021 he passed his drivers license exam and loves his new found freedom! In his spare time he loves to do jigsaw puzzles, word searches and play video games. Eddie loves being part of the CSS Foundation Self Advocate team and helps 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!

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MARKY LYNCH

Self Advocate Advisor

Marky is 19 and lives in Maryland. He is finishing up high school as a homeschooler. Marky especially enjoys any and all field trips. Marky loves to listen to music, especially Disney songs and any musical. He is part of Pegasus, an acting troupe for teens with disabilities. He enjoys all types of art classes . He hopes to help social activities for teens/young adults and to be involved in planning for the upcoming conference.

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JOEY MINCH

Self Advocate Advisor

Joey is 30 years old from Baltimore, MD. He was diagnosed in 2020 with CSS, ARID1B. Joey is so thrilled to be living in an apartment with 24/7 support. During the week, Joey ventures into the community volunteering with Meals on Wheels, delivering meals to those in need. Soon Joey hopes to participate in a special training program with CVS; he hopes to work retail in a neighborhood CVS store. In his spare time, Joey loves playing word games, completing cross word puzzles, and putting together jigsaw puzzles. He enjoys listening to music. Over the past several years, Joey has been a part of a local Special Olympics swim team. Being part of this Self Advocacy Advisory board will provide Joey the opportunity to meet and connect with other young adults and well as provide a voice for those who might not have one quite yet.

Matthew

MATTHEW PIRIE

Self Advocate Advisor

 

Matthew is 19 and lives in Calgary, Alberta. He volunteers with his mom at the Calgary Food Bank and is starting a new day program. He enjoys camping with his parents, skiing, swimming, air shows and playing bocce. He gives the world's best hugs!

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 Foundation@coffinsiris.org

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