Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve. The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED. The PCC focus is to advise staff and families on issues related to both treatment and education. Today, I would like to focus on the SAC.
The SAC’s primary focus is to manage all aspects of the NFED’s research funding. In addition to directing, reviewing, and approving extramural research, the SAC plays a major role in all intramural research undertaken by the Foundation. The SAC also works closely with the PCC and the NFED staff to assure all patient and professional information meets our highest standards for accuracy and efficacy. Improving professional education and awareness is also key to the mission of the SAC.
The members of the SAC dedicate hundreds of hours to our mission each year. They attend and participate in our Family Conference and answer numerous questions for staff and families. They work on numerous NFED publications and programs.
I strongly believe they are the backbone of the NFED and the reason we have been so successful over the past 35 years. Our NFED family wants to thank these individuals for sharing their time, their expertise and resources so generously with us. Thank you!
It is my pleasure to announce two new SAC members: Pilar L. Magoulas and Dr. Clayton Butcher.
Pilar L. Magoulas is a Genetic Counselor, Assistant Professor, and the Genetics Clinic Manager at Texas Children’s Hospital and Baylor College of Medicine. She also serves as Chief of the Division of Genetic Counseling in the Department of Molecular and Human Genetics at Baylor College of Medicine.
Her primary responsibilities include coordination of the inpatient consultation service, managing the Genetics Clinic at Texas Children’s Hospital, and supervising all of the genetics office staff, genetic counselors, research coordinators, and nurses.
She received her BS degree in psychology from the University of Florida and obtained her MS in genetic counseling from Northwestern University in Chicago, Illinois in 2003. Pilar also serves on the Board of Directors for a rare syndrome support group called, Cardio-facio-cutaneous syndrome (CFC International), where she was one of the first and only non-parent board members, and serves as a medical liaison for RASopathies Network, USA – a non-profit organization for a group of rare genetic syndromes.
Some of her greatest joys have been getting to know the kids and families affected with rare genetic conditions and by attending the family conferences, usually with her own family in tow. When she is not working, Pilar enjoys spending time with her two children, Sophia (age 7) and Gabriel (age 5), running, and watching football. She is very excited to be joining the NFED family and looks forward to creating long-lasting memories and relationships with all of the kids and families.
Dr. Clayton Butcher is a physician at the University of Missouri–Columbia and practices both internal medicine and pediatrics. His clinical interests include preventative medicine and inpatient pediatrics.
He joined the Scientific Advisory Council in 2015 and is hoping to use his knowledge in both pediatric and internal medicine to address ongoing challenges faced with individuals with ectodermal dysplasia syndromes as they transition from kids to adults.
Dr. Butcher is very excited to meet and work with our community. When he is not practicing medicine, Clayton enjoys spending time with his wife, Beth, and his 17-month-old daughter, Callie.
Welcome Pilar L. Magoulas and Dr. Clayton Butcher!
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