Founded in 2019, Advancing CTNNB1 Cures and Treatments is a nonprofit organization that funds research to develop treatments and a cure for CTNNB1 Syndrome. We are led by a dedicated team of parents and business professionals and guided by strategic advisors, including our Medical Advisory Board.
Board of Directors
Lauren is the mom of Declan, Emma and Elizabeth. Lauren has a B.A. from Villanova University and previously worked at L’Oréal USA before deciding to stay home to raise her children. Lauren loves painting, gardening and spending time with family and friends. She is busy raising three amazing children and passionate about finding a cure for CTNNB1 syndrome.
Sean is a Portfolio Manager and Trader at Shelter Growth Capital Partners as well as a member of their investment committee. Sean holds a B.S. in Business Administration in Finance and a B.A. degree in Economics, both from the Villanova School of Business. More important than his professional responsibilities, Sean is the father to his three incredible children, Emma, Declan and Elizabeth, and does his best to back up his wife Lauren. Together, they are determined to make a positive difference in the life of their son Declan and all the other amazing children just like him.
Nicole DashiellVice President & Secretary
Nicole is mom to Caroline, Matthew and Thomas Dashiell. She has B.A. from Indiana University of Pennsylvania and worked for many years in the fashion industry as a merchandiser and buyer before staying home to raise her children. She enjoys spending time with friends and family, playing tennis and is very involved in her children’s school and community.
Alex is currently a Managing Director at Willow Tree Credit Partner, a middle market credit alternatives platform. Alex earned a B.S. from the McIntire School of Commerce at the University of Virginia and is a CFA Charterholder. He is the proud father of Matthew, Caroline and Thomas and enjoys traveling with his family and playing and watching sports with his three children. Alex and Nicole are committed to helping Caroline fulfill her full potential, while also helping to raise awareness and research for rare genetic syndromes.
Mariana ParksPresident Emeritus, CTNNB1 Syndrome Awareness Worldwide
Mariana Parks is retired from a career in public policy, having worked as Deputy State Director and speechwriter for US Senator Slade Gorton, and most recently as president of the Slade Gorton International Policy Center. She also served as Senior Advisor for US Representative Dave Reichert; VP Communications for the Washington Policy Center; and Communications Manager for Microsoft Law & Corporate Affairs. Parks subsequently ran her own company providing consultancy to a broad range of corporate, political and non-profit organizations, and continues to serve on several boards. She served as president of CTNNB1 Syndrome Awareness Worldwide (CSAW), a non-profit organization dedicated to advancing awareness of the ultra-rare genetic disorder, which affects her grandson, Ford. After CSAW merged with its sister organization, Advancing CTNNB1 Cures and Treatments (ACCT), she now serves on the Board of the merged organization. Parks lives with her husband in Mercer Island, Washington, and is grateful to be near her two sons’ families with all four of her grandchildren.
Annie WoodFamily Support and Engagement Officer
Annie Wood earned her B.A. from Monmouth College and her Masters in school counseling from Western Illinois University. She was a third grade teacher for six years until becoming a school counselor in 2011. She was Vice President of CTNNB1 Syndrome Awareness Worldwide (CSAW) before the merger and now serves on the board of the merged organization. Her passion is to help build awareness for CTNNB1 and help build connections between families through meetups, conferences, and as a Sibshop facilitator. Annie is the proud mother of Preston, Jameson, Finley, and McKinley. She and her husband, Chad, reside in rural Illinois.
Kayla Cayton is an incoming medical student at the University of Washington School of Medicine. She is currently working as a research assistant in Rehabilitation Medicine at Harborview Medical Center in Seattle, WA. She is former Executive Director for CTNNB1 Syndrome Awareness Worldwide (CSAW) and started working with CSAW in October 2019. Kayla graduated from the University of Washington with a Bachelor of Science in 2018. Outside of school and work, Kayla enjoys reading, traveling, and eating.
Christine Bell Currence
Christine Currence is the President of Badgley Mischka, a global iconic design house. She spearheaded the purchase and privatization of Badgley Mischka with partners, including Mark Badgley & James Mischka, from Iconix Brand Group in 2016. Mrs. Currence owned and operated MJCLK LLC, a women’s wear company holding the exclusive Badgley Mischka apparel license since 2008. Prior to that Christine was the Brand Manager, for previous IP owner Iconix Brand Group, from 2006 to 2008. Mrs. Currence began her career as a Design Assistant, before making the turn into licensing at Nicole Miller. As Director of Licensing from 2003 to 2006, Mrs. Currence built Nicole Miller’s licensees from 11 to over 30, including exclusive deals with Bed Bath & Beyond, and the creation of Nicole by Nicole Miller for JCPenney. Currence holds a B.A. from Oregon State University. She resides with her husband and 2 children in New York City.
Rachel Onufrychuk is the aunt of Caroline Dashiell. She is a pediatric nurse in the recovery room at Rady Children’s Hospital in San Diego, California. Rachel is a 2011 graduate of Villanova University’s School of Nursing and has worked in pediatric units at Children’s National, Morgan Stanley Children’s Hospital & NYU Medical Center. Rachel has been a key part of Caroline’s medical journey.
Paul Curmi is the loving uncle of Declan Cochran. He is a Director of Business Development at Napier Park Global Capital, an alternative credit asset management firm with $12bn in assets under management. Paul graduated from Fordham University with a B.S. in Business Administration. He currently lives in Jersey City with his wife Allison and son Noah. Paul enjoys running and has completed two New York City Marathons.
Robert Engelking is a Managing Director at R.W. Baird in the Chicago office of their Fixed Income department where he has been since 2016. Known to his friends as Robby, he along with his wife Kiki, have been great friends of the Cochrans for years. Robby previously spent 30 years as a senior salesman in Fixed Income for Merrill Lynch, and then Bank of America Merrill Lynch where he and Sean worked together for 10 years. Rob has a Bachelor of Science in Business Administration from Elmhurst College and an M.B.A. from Loyola University in Chicago. He is most importantly a father to four beautiful daughters.
Virginia DaveyCommunity Fundraising Advisor
Virginia is mom to Juju. She also serves as ACCT’s Community Fundraising Advisor.
Spela MirosevicResearch Collaborator, CTNNB1 Foundation
Spela is mom to Urban, as well as a research collaborator and president of the CTNNB1 Foundation (International Research Fund, Gene Therapy).
Ashley SwiftFamily Onboarding, Registry and Natural History Study
Ashley is mom to Evelyn. She’s also responsible for family onboarding for the CTNNB1 Patient Registry and Natural History Study.