CTNNB1 Connect & Cure is led by a dedicated team of parents and business professionals and guided by strategic advisors and 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.
Nicole DashiellVice President & SecretaryNicole@curectnnb1.org
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.
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.
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, CSAWmariana.firstname.lastname@example.org
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 WoodCommunity Engagementannie@curectnnb1.org and email@example.com
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. She created and hosts our CTNNB1 Connect & Cure Podcast.
Effie ParksStrategic Partnershipseffie@curectnnb1.org
Effie, mother of 6-year-old Ford, created the podcast, Once Upon A Gene. Since its launch in 2019, Effie has interviewed hundreds of parents, professionals, and advocates in the rare-disease community. She has won many awards, including the WEGO Health Award for Best in Show Podcast, the Disorder Channel Award for Best Rare Podcast, and Podcast Magazine’s 2022 “40 Under 40 in Podcasting” list. Effie is the Community Engagement Coordinator for Global Genes. She lives in Mercer Island, Washington with husband Casey, Ford, and Ford’s little sister Esme.
Tony KingDevelopment and Grantstony.firstname.lastname@example.org
Tony King is the father of Tony Jr. He has a B.S in Biology/ Forensic Science from The University of South Carolina and an M.B.A from Webster University in St Louis, MO. Additionally he served seven years as an officer in the US Army. Tony is currently an FBI Special Agent assigned to the Baltimore Field Office where he supervises large-scale investigations in the Mid-Atlantic Region. Tony has represented the CTNNB1 community on the Simons Searchlight Community Advisory Board since 2019. Tony currently is responsible for a number of projects including discovering grants and other fundraising opportunities for CTNNB1 Connect and Cure.
Ashley SwiftOutreach and Family Onboardingashley@curectnnb1.org
Ashley, mom to Evelyn, is responsible for family onboarding for the CTNNB1 Patient Registry and Natural History Study. She is also working to connect more with the Cerebral Palsy community.
Emily AmersonSocial Media and Technologyemily@curectnnb1.org
Emily, mom to Savannah, has bachelor’s degrees in Mathematical Science and Secondary Education from Clemson University as well as a Master’s in Mathematical Science. She taught high school math for 5 years and then founded an online tutoring company. Emily manages our social media platforms.
Kayla CaytonBoard Member
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 CurrenceBoard Member
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.
Paul CurmiBoard Member
Paul Curmi is the loving uncle of Declan Cochran. He is a Managing Director and head of product and investor relations at Napier Park Global Capital, an alternative credit asset management firm. Paul graduated from Fordham University with a B.S. in Business Administration. He currently lives in Jersey City with his wife Allison, son Noah, and daughter Grace. Paul enjoys running and has completed two New York City Marathons.
Diana O’MaraFundraising and Community Engagement Advisordiana@curectnnb1.org
Diana is mom to Alexander and wife to Jerry. Together they live in Southern New Jersey just outside of Philadelphia. Diana has a specialized degree in restaurant management and a background in party/event planning. In 2022 she chaired a fundraiser to benefit CTNNB1 and is looking forward to this becoming an annual event. Diana enjoys spending time with family/friends, home improvements, crafting and planning events.
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).
Jennifer HubertSocial Media Advisorjennifer@curectnnb1.org
Jennifer is a high school chemistry and biology teacher. She also runs a baking business at her family farm. Her daughter, Adelaide, was diagnosed with CTNNB1 Syndrome in November of 2014, when she was about 2 1/2. Jennifer helps manage our CTNNB1 Connect & Cure social media accounts.
For questions or more information about CTNNB1 Syndrome, funded research or how you can get involved, please get in touch with our team using their contact emails, or for more general inquiries you can Contact Us.