Our Team

Emily and her husband, Cody, live in Charleston, SC, with their two daughters, Savannah and Nora. When Savannah was diagnosed with CTNNB1 syndrome in 2022, Emily immediately got involved by organizing a fundraiser and managing CCC’s social media. She became increasingly active in the operations of the organization, and was appointed President at the end of 2023. Previous to this role, she taught high school math and founded an online tutoring platform. Emily holds bachelor’s degrees in Mathematical Science and Secondary Education from Clemson University as well as a Master’s in Mathematical Science.

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 four incredible children, Emma, Declan, Elizabeth and Daisy, 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.

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, 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.

Lauren is the mom of Declan, Emma, Elizabeth, and Daisy. 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 four amazing children and passionate about finding a cure for CTNNB1 syndrome.

Lauren helped found CTNNB1 Connect & Cure (formally Advancing CTNNB1 Cures and Treatments) in 2019. She served as President of the non-profit from 2019-2023 helping to establish our current research program, Registry and Natural History Study. She was instrumental in the planning of our virtual conferences and first in person Natural History Study and Research Conference in 2023.

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. She lives in Mercer Island, Washington with husband Casey, Ford, and Ford’s little sister Esme.

Lindsay is CTNNB1 mom to sweet Lark. Professionally, she is the Regional Gift Officer for Cornell University and works on cultivating relationships with university donors. She brings energy and expertise to our fundraising initiatives.

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.

Bruno Ramalho lives in Porto, Portugal, and is the father of Mafalda. Since Mafalda’s diagnosis in 2019, Bruno has been actively involved in supporting the CTNNB1 Syndrome community. He is a software developer and uses his skills and resources to help other parents and contribute to CTNNB1-related initiatives.

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. 

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.