Meet the BWS Team
The Nicklaus Children's Hospital Center for Beckwith-Wiedeman Syndrome is one of the few in the nation with a long-standing interest and experience in evaluating and caring for children with BWS. Our multidisciplinary team includes:
craniofacial surgery, vascular anomalies and pigmented lesions of the skin
Director, Neurofibromatosis Program
Katherine Schain, M.S., CGC
Katherine Schain is a board certified genetic counselor. She has a B.S. in Biological Sciences from Florida State University and a Master of Science in Genetic Counseling from Northwestern University. She has served as the genetic counselor for the Craniofacial Center and Clinical Genetics at Nicklaus Children's Hospital since 2000 and has extensive experience in working with prenatal and pediatric populations.
Karina Torres, MSN, ARNP, FNP-BC, CPN
Karina is a board certified family nurse practitioner and serves as Program Coordinator of the Craniofacial Center at Nicklaus Children's Hospital. She has a master of science degree in nursing from Barry University and a bachelor of science in nursing from Florida International University. Karina is responsible for the clinical management of children with craniofacial differences and various genetic conditions, as well as, their outpatient and inpatient care. She has worked at Nicklaus Children’s Hospital since 2005 and has extensive experience in the care of children with complex and chronic medical conditions.
Kristen Burr, BWS Coordinator
Kristen started her career in 2003 under the direction of Dr. Jeffrey Marsh in St. Louis, Missouri where she developed her passion for helping BWS families from all over the world. Kristen has helped and/or met more than 500 families worldwide to help with their care or that of their child. She has advanced knowledge regarding tongue reduction, dealing with insurance companies, and coordination of care with multiple specialties. She assists families requiring visas to come to the U.S.for surgery and helps them with lodging. Kristen partners with the Beckwith-Wiedemann Children’s Foundation International to help families with assistance for airline tickets. Kristen is also very active in the BWS community attending BWS conferences promoted by the BWCF and running medical clinics from 2003-2011, with undertaking her own planning of the BWS conference in 2014 in St. Louis and planning another one in 2016 at Nicklaus Children’s Hospital. Kristen is very active on social media regarding BWS and belongs to many Facebook groups and is also an administrator on a Facebook group for parents only. Kristen is connected to many BWS foundations around the world and directs families to their local support system and/or connects them to parents in their area for support.
Speech Therapy Specialists
The therapists assist families in feeding their infants and in techniques for post-surgery feeding. The speech pathologist evaluates each child prior to surgery to assess feeding and language. The therapist will also communicate with a therapist from the patient’s hometown to address goals and how to achieve them post tongue reduction.