BOARD OF DIRECTORS AND ADVISORS
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.
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.
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 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.
KRISTEN MCGRAW
Board Member
BECKY DUBAY
Board Member
KATIE KNEISEL
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.shows, crafting, and exploring.
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.
Katie lives in Hilliard, Ohio with her husband and their beautifully blended family.
Her son Auron, 11 was diagnosed with ARID1B in 2016, after three and a half years of genetic testing. Since then, they have been navigating a complex medical journey in order to give Auron the absolute best quality of life.
Meeting and chatting with newly diagnosed parents/caretakers from all over the world, listening as they expressed their fears of uncertainty, ignited the thought of having a new diagnosis welcome packet in hopes new families would feel a sense of peace knowing that they are not alone on this journey.
Her background for the past 20+ years has been working in dentistry as a CDA and as of the past couple of years as treatment coordinator. When she's not working and “doing all of the things” that accompanies raising rare, she enjoys gardening, traveling and meeting new people. She is also a volunteer with the Family Advisory Counsel with Nationwide Children’s Hospital.
PARRISH BURGESS
BRION JOHANSEN
SHEA ROBINSON
Board Member
Parrish is a mom to 4 children living in Middle Tennessee.
Her son Gatlin, 4, was diagnosed with Coffin-Siris Syndrome, ARID1A, in December of 2022. Gatlin’s diagnosis didn’t come easy, as he was misdiagnosed early on in his life. She quickly connected with other families, & it was like her broken heart mended and healed just by being embraced by the incredible community that we have. She is very excited to pour her heart into the fundraising portion of the CSSF. She has a goal to bring our local communities together to raise awareness about CSS and how they too can help us navigate the journey of raising rare.
She currently works for her local human resource agency, supporting families and children that strive for a better way of life.
Whenever she finds herself with a quick moment to breathe in the midst of life; she loves to travel, make silly TikTok’s with her modern day Brady bunch, & being involved as much as she can be giving back into her local community.
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.
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.
DR. SAMANTHA VERGANO
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.
DR. GIJS SANTEN
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.”
EMILY PLACE,
MS LCGC
Medical Advisor
Emily earned her master’s degree in Human Genetics from Sarah Lawrence College. She has over 15 years of experience working in the field of genetics as a clinical and researcher genetic counselor caring for individuals and families with inherited genetic conditions. She leads a team of genetic counselors in the Department of Ophthalmology and Ocular Genomics Institute (OGI) at Mass Eye and Ear, in Boston MA. Prior to joining the team at Mass Eye and Ear, she worked in the Clinical Genetics Department at The Children’s Hospital of Philadelphia. Emily is a parent of a child with ARID1B related CSS.
DR. TIM
FEYMA
Medical Advisor
Dr. Tim Feyma is a pediatric neurologist at Gillette Children's Hospital in St. Paul, MN. Dr. Feyma specializes in epilepsy and seizures, developmental delay, and genetic syndromes among other neurologic conditions.
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.
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!
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.
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 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.
