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 3-year-old son. When she gets some free time, you can find Heather traveling, cooking, reading, or exploring the hiking trails in Utah.

Mary Ernst and her family, including her youngest, Maggie, a young woman with Costello syndrome, live in Carbondale, Colorado. She has attended every Costello conference since the first in Birmingham, Alabama, in 1999. Mary loves spending time with family and friends and traveling with them whenever possible.

Ellyn Farrelly earned a Master’s degree in Human Genetics and Genetic Counseling from Stanford University. She now works in the Medical Genetics Department at Lucile Packard Children’s Hospital at Stanford where she sees children and adults with many different genetic concerns. She has a special interest in patients with RASopathies and coordinates the division’s RASopathy/Neurofibromatosis clinic. She is also a clinical instructor for the Stanford Genetic Counseling program where she works with students to help them think globally about how to best help patients with genetic conditions. Ellyn is currently serving as the secretary of CSFN.

Robert Hefner is the father of Erin, who has Costello syndrome and is in her mid-30s. Erin lives at home with Robert and his wife, Kate in Creve Coeur, Illinois (Peoria area). Bob is a retired engineer who worked for Caterpillar Inc. for 36 years. He spends several days of each week chauffeuring Erin to jobs and activities. He is also a board member for the Heart of Morton, a group formed to provide activities and socializing for adults with disabilities that have aged out of the school system. Bob has been on the Board since 2017 and serves as the CSFN treasurer.

Lara Hagler Weeks is an educator with 26 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 3 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 four 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.

Jill Kazakoff lives in Edson, Alberta, Canada with her husband Jason and her two daughters, Madeline and Ali who was diagnosed with Costello Syndrome (G12S) in February, 2010. Jill completed an Honors Biology degree at the University of Waterloo (with a focus on genetics and biotechnology), a Cytotechnology diploma at the Northern Alberta Institute of Technology, and recently she received a certificate in child development. Her background includes working in a hospital setting screening for and making cancer diagnoses, teaching in a Cytotechnology program that she helped to build and write programming for and facilitating programming for families, children and adult foundational learners. She currently works with adult learners on a contract basis but her focus is on her family and she works hard to ensure that she is knowledgeable about Costello Syndrome in order to give Ali the highest quality of life possible. This includes attending 5 CSFN conferences since Ali’s diagnosis and serving as a member of the research committee and chair of the outreach committee. In her spare time, Jill enjoys training her sheltie for agility trials, learning about canine fitness and she’s a member of the executive of her local agility club. As a family, the Kazakoffs enjoy camping, outdoor activities and travel, especially CSFN conferences!

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.

Sheri Holcomb is a new member of the Costello Syndrome Family Network board. 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-two 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.

Gail Deckman is the mother of 28-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.