Board of Directors

Heather Hamblin has been attending Costello Syndrome Family Network conferences since 2009 in support of her older brother, Christopher, and has been serving on the board since 2019. Heather is a full-time working mom, professionally appearing as a Strategic Communications Manager for University of Utah Health, and trying to keep up with her 4-year-old son. When she gets some free time, you can find Heather traveling, cooking, reading, or exploring the hiking trails in Utah.

Liz lives in Minneapolis, Minnesota with her husband Dan, son Peter, who is 32 years old and has Costello Syndrome, and their dog Daisy.  She also has a daughter Katie, son-in-law Bryan, and a son Joseph.  Liz is a retired Speech-Language Pathologist, working with children from birth to 21 years.  She has attended all the conferences starting in Birmingham Alabama in 1999. This past year Liz was on the CSFN fundraising committee.

Gail Deckman is the mother of 30-year-old Collin who was visually diagnosed with Costello Syndrome at five weeks of age in 1995 at the A.I. duPont Hospital for Children. Gail had worked for 18 years in healthcare insurance prior to Collin’s birth. She and her husband Bruce live in Sinking Spring, PA, with Collin who keeps them very busy transporting him to jobs and activities. Their other two children (and six grandchildren!) live close by to be near Collin. They have attended every conference since Toronto in 2001.

Sheri Holcomb joined the Costello Syndrome Family Network board in 2023. She and her husband, Daniel, have three adult sons; the youngest, Theodore has Costello Syndrome (G12S). Sheri and her family reside in Bucksport, Maine, and she has worked as a librarian for over twenty-four years. The Holcomb family attended their first Costello Syndrome Conference in 2011, and you may recognize Sheri as she has volunteered on several committees within CSFN throughout the years. She looks forward to supporting other families impacted by Costello Syndrome and serving the organization.

Lara Hagler Weeks is a former educator with 31 years of experience teaching primary, inclusion classes. She has a Bachelor of Science in Elementary Education and a Master’s degree from Florida State University. Along with a team of teachers, Lara fought for the rights of special needs students and helped to create and implement an inclusion program which became a model for Bay District Schools. Lara has been married to David Weeks for 42 years, has three children and seven grandchildren. The Weeks’ family resides in Panama City, Florida where they are members of First United Methodist Church and avid Alabama football fans. She has attended the last six Costello Syndrome Family Network Conferences. She has helped Sandra Taylor prepare for the conference, organized and ran the “CS Lounge” for the Costello adults, and helped with the sibling sessions.

Cristin Griffis earned a Master’s degree in Genetic Counseling from Indiana University. She works in the Genetics and Genomics Department at Children’s Wisconsin/Medical College of Wisconsin, where she sees children and adults with a variety of genetic conditions, leads the institution’s laboratory stewardship for the genetic testing program, and is a clinical supervisor for the Medical College of Wisconsin’s Master of Science in Genetic Counseling program. She has worked in the Children’s Wisconsin Neurofibromatosis and RASopathy Clinic since 2014 and has developed a strong interest in this group of conditions.

Megan Frone, M.S., L.G.C., is a Genetic Counselor in the Clinical Genetics Branch (CGB) of the National Cancer Institute | National Institutes of Health. She provides genetic education and counseling to participants across the CGB clinical studies and is the lead genetic counselor for the RASopathies Study. Her responsibilities also include variant annotation and curation for clinical and research activities within DCEG and for ClinGen. She is the coordinator of the ClinGen TP53 Variant Curation Expert Panel.

Megan holds a B.S. in biology, with a concentration in cell and molecular biology, from SUNY Binghamton University, New York, and an M.S. in genetic counseling from Virginia Commonwealth University in Richmond with a Virginia Leadership Education in Neurodevelopmental Disabilities (Va-LEND) Diplomate.