2017 – 2019 CSFN Board of Directors

Cherie Takemoto – President

Cherie Takemoto, from Arlington, Virginia attended her first Costello conference in Berkeley in shortly after her son was diagnosed with Costello syndrome in 2009, at the age of 18. She has been on the CSFN Board since 2012. Most of Cherie’s career has been as a disability advocate. She ran Virginia’s parent training and information center for families of children in special education for many years. She currently is working on disability-related consulting for the Rehabilitation Services Administration. Cherie recently earned a Ph.D. in Education from George Mason University.

Angel Thomas – Vice President

Angel Thomas is a Yield Enhancement Engineer with NXP Semiconductors in Austin, Texas. Her son, Westin is a young boy with Costello syndrome and attended his first of four Costello conferences in Chicago in 2011, when he was 5 months old. As the Vice President of the Costello Syndrome Family Network, she enjoys reaching out to newly diagnosed families to welcome them and answer their questions, connecting them with other families, experts, and research publications to share with their doctors.

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.

Mary Ernst – Secretary

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-Elect of CSFN and also serves as secretary. 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.

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.

Ellyn Farrelly

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.

 

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