Johns Hopkins All Children’s Institute for Brain Protection Sciences (IBPS)

Neurofibromatosis Education Symposium

The Neurocutaneous Disorders Clinic at All Children’s Hospital provides comprehensive care for children and adolescent patients with neurocutaneous disorders including Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Tuberous Sclerosis. More than 500 patients have been treated at All Children’s Hospital. A multidisciplinary team of healthcare professionals provide medical care and related support to each patient.

The Neurofibromatosis Education Symposium is for parents, family members, school-age children, teens and healthcare providers. There is no childcare provided.

Date/Time

Saturday, May 12, 2018
8 a.m.–4 p.m.

Location

Outpatient Care Center, Conference Room A
601 5th Street South, St. Petersburg

Register

 

Agenda

8:00-8:30 Registration and Breakfast with Opening Remarks
Stacie Stapleton, M.D.
8:30-9:30 NF Life Experience
Experiences of two mothers with young children with NF
Experiences of a teenager with NF
Stories from adult living with NF
9:30-9:45 BREAK
9:45-10:45 NF Medical Professionals 1
NF Associated Tumors,
Stacie Stapleton, M.D.
Anxiety and depression in children and adolescents,
Jennifer Katzenstein, Ph.D.
10:45-11 BREAK
11-12 NF Invited Key Note Speaker
Bruce R. Korf, M.D., Ph.D.
12-1  LUNCH with Q&A with Medical Professionals Panel
1-2 NF Medical Professionals 2
Genetic Testing in Neurofibromatosis,
Melissa Crenshaw, M.D.
Neurofibromatosis in Adults,
Xia Wang, M.D., Ph.D.
2-2:15 BREAK
2:15-3:45 NF Connection
Neuropsychological and Psychosocial Functioning in Youth with NF, Jill Wise, Ph.D.,
School and Behavioral Services
for Youth with NF, Megan Sy, M.S.
Children’s Tumor Foundation
3:45-4 Final Remarks/Questions
4 Adjourn
   

Presenters

Stacie Stapleton, M.D., completed her pediatric residency at Lackland Air Force Base and fellowships in pediatric hematology/oncology and pediatric neuro-oncology at Baylor College of Medicine/ Texas Children’s Hospital. She is board certified in pediatrics and pediatric hematology-oncology and directs the Johns Hopkins All Children’s Hospital Neurocutaneous Disorder Clinic.


Melissa Crenshaw, M.D., serves as medical director of genetics at Johns Hopkins All Children's Hospital. Following a pediatric residency at Inova Fairfax Hospital, she completed a three-year medical genetics program at Johns Hopkins University. Dr. Crenshaw is board certi ed in pediatrics, and clinical genetics.


Bruce R. Korf, M.D., Ph.D., is the Wayne H. and Sara Crews Finley Endowed Chair in Medical Genetics at University of Alabama at Birmingham and Chief Genomics O cer, UAB Medicine. He has a longstanding clinical and research interest in neuro bromatosis. He directs the UAB Neuro bromatosis Program, which provides clinical care to children and adults with all forms of neuro bromatosis. He also serves as principal investigator of the Department of Defense-funded Neuro bromatosis Clinical Trials Consortium and as chair of the Children’s Tumor Foundation Medical Advisory Committee. Dr. Korf’s research on NF includes conduct of clinical trials and a drug discovery program intended to develop therapies to restore function to the mutated gene or gene product.


Xia Wang, M.D., is a clinical geneticist with accreditations from the American Board of Medical Genetics and the American Board of Internal Medicine. She has more than 5 years of clinical experience in genetic conditions a ecting adults. Her work focuses on cancer genetics, cancer screening and health maintenance for individuals with hereditary risks, and comprehensive care for individuals with complex hereditary cancer/tumor syndromes, such as Neuro bromatosis (NF). Dr. Wang is passionate about the comprehensive care for patients with NF. She created and directs the rst multi-disciplinary neuro bromatosis clinic in Florida dedicated to adult patients. Funded by US Army Medical Research, Dr. Wang has conducted investigations regarding breast cancer in women affected with NF1.


Jennifer Katzenstein, Ph.D., ABPP-CN, is the clinical director of neuropsychology at Johns Hopkins All Children’s Hospital. She completed her residency training at Texas Children’s Hospital and is dual board certi ed by the American Board of Professional Psychology.


Jillian Wise, Ph.D., is a second-year pediatric neuropsychology post-doctoral resident at Johns Hopkins All Children's Hospital. After earning a doctorate in school psychology at Indiana University, she completed a 1-year internship at St. Jude Children’s Research Hospital.


Megan Sy, M.S., is a psychology intern at Johns Hopkins All Children's Hospital and will be beginning her rst year as a pediatric neuropsychology resident in August 208. She is currently completing her doctorate in school psychology and is a New York State certi ed bilingual school psychologist.


Register for the Neurofibromatosis Education Symposium