Executive Director

Sandra Taylor – Executive Director

Sandra Taylor became CSFN’s first executive director in 2016 after serving as President from 2011-2014. She resides in Panama City, FL, and her adult daughter Jill, with Costello syndrome, lives in her own apartment next door.  Sandra has attended 10 of the 11 previous conferences and worked on several conferences as registrar prior to serving as Conference Coordinator in 2013, 2015, 2017 and 2019.  Sandra graduated with an AS degree in legal assisting and earned national certifications in legal assisting and in human resources.  She has over 45 years of administrative experience, mostly in the medical and legal field.  Most recently she worked as marketing director and then human resources director for a large resort vacation rental management company.  

2019 – 2021 CSFN Board of Directors

Mary Ernst – President

Mary Ernst lives outside of Boston, Massachusetts and her youngest, Maggie, is a young woman with Costello syndrome. She has attended every Costello conference since the first in Birmingham, Alabama in 1999. She has been a yoga instructor for 12 years. Mary is the President of CSFN. She brings a fresh and calming perspective to her work to keep CSFN organized and shares her experience and knowledge from serving on other boards.

Angel Thomas – Vice President

Angel Thomas is a Yield Enhancement Engineer with NXP Semiconductors.  She lives in Austin, Texas, with her husband Stephen, son Westin, and daughter Haydon.  She graduated with a B.S. in Chemical Engineering from The University of Iowa.  Angel’s son, Westin, is 8 years old and has Costello syndrome.  They have attended five Costello syndrome conferences, starting with the conference in Chicago in 2011 when Westin was 5 months old. As the Vice President of the Costello Syndrome Family Network, Angel enjoys reaching out to newly diagnosed families to welcome them, answer their questions, connect them with other families and experts, and share research publications with them.  She also enjoys assisting with the fundraising, social media/outreach, and research committees.  New families can e-mail her at angel@costellosyndromeusa.org.

Robert Hefner- Treasurer

Robert Hefner is the father of a 33-year-old daughter, Erin, who has Costello syndrome. 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.

Ellyn Farrelly – Secretary

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.

Raileen Eaton

Raileen Eaton, from Salisbury, Massachusetts, has a teenage son, Nicholas, with Costello syndrome. She is a Hemodialysis Patient Care Technician and a nurse. Raileen has attended the Costello syndrome conferences since 2007 after Nicholas was diagnosed in 2005. She is passionate about CS and is involved on the listserv, Facebook page, fundraising, research, and outreach efforts. Raileen is medically knowledgeable, proactive, task oriented. She believes that CSFN has been invaluable for her family and wants to give back to others, the support she has received over the years.

Laura Baker

Laura Baker earned a Master’s degree in genetic counseling from the University of Maryland School of Medicine. She now works at the Nemours Center for Cancer and Blood Disorders and with Dr. Karen Gripp in the RASopathies clinic where she has the great pleasure of working closely with and learning from a number of families whose children have Costello syndrome. Whether a family is just learning of a new diagnosis or has been caring for children (or adults) for some time, she loves helping them advocate for the complex health care services their children need. Laura co-chairs the CSFN Research Committee.

Heather Hamblin

Heather Hamblin has been attending Costello Syndrome Family Network conferences since 2009 in support of her older brother, Christopher. She was born and raised in Northern Utah, and received a B.A. from the University of Utah, studying English literature, writing, and Italian language. Professionally, Heather works as a Project Administrator for University of Utah Health’s Community Physician Group. She has also built an extensive writing portfolio through freelance work, contributing to various publications on travel, outdoor sports, and food trends. When she gets some free time, you can find Heather traveling, cooking, reading, practicing yoga, rock climbing, or exploring the hiking trails and ski runs in her native state.

 

Jill Kazakoff

Jill Kazakoff lives in Edson, Alberta, Canada with her husband Jason and her two daughters, Madeline, age 11 and Ali, age 9, 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 knowledgable 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. 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!

Lara Weeks

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.

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