2025 Neurofibromatosis (NF) and Schwannomatosis (SWN) Patients and Caregivers Symposium

Please join us for the first in-person NF and SWN Patients and Caregivers Symposium since the COVID pandemic.

NF refers to neurofibromatosis type 1, whereas SWN includes all forms of schwannomatosis, including NF2-related SWN (previously known as NF2). UAB and Children’s of Alabama (COA) are partnering again to provide a down-to-earth, easily understandable informational event for patients and families touched by NF and SWN. This year’s speakers include the new Director of the NF and SWN Program, Rebecca Brown, M.D. Ph.D., who takes over for Bruce Korf, M.D., Ph.D., following his retirement. Additionally, we will have a patient speaker and loads of helpful information on new scientific developments, clinical trials, drug treatments, and surgical treatments for both NF and SWN. Representatives from the companies that provide drug treatments such as Gomekli (mirdametinib), Koselugo (selumetinib), and others, will be on-site to provide information as well. We will provide the speakers, the food, live music, giveaways, and a service dog, as well as daycare and activities for children on-site. This is a great activity to meet your care team and network with other folks going through similar experiences.

This event will be free of charge, thanks to the gracious donations of Birmingham’s businesses, philanthropic donations, and funding from the Children’s Tumor Foundation.

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Keynote Speaker

Charlene Bishop

Topic: "Living with Neurofibromatosis Type 1"

Charlene Bishop is a long-time patient of the UAB Neurofibromatosis (NF) Program, first under the care of Dr. Bruce Korf and now with Dr. Rebecca Brown following Dr. Korf’s retirement. Diagnosed with neurofibromatosis type 1 (NF1) in her pre-teen years, Charlene has lived with the condition for decades and brings a deeply personal perspective to the NF community.
 
As a military wife for 20 years, she experienced frequent relocations and care from many different doctors. These experiences taught her the importance of self-advocacy and resilience in navigating NF. Now 59, Charlene shares her journey to encourage others living with NF and their families, offering hope and insight into thriving despite challenges.
 
She will serve as the Keynote Speaker for the 2025 NF and SWN Patients and Caregivers Symposium.  

Speakers

Rebecca Brown, M.D., Ph.D.

Rebecca Brown M.D., Ph.D., is the Director of the Neurofibromatosis (NF) and Schwannomatosis (SWN) Program at UAB and Children’s of Alabama. Dr. Brown became interested in NF and SWN during medical school at UT Southwestern in Dallas, Texas, where she researched the biology of cutaneous neurofibromas. She is an experienced molecular biologist including using genome editing, cell culture, and mouse models of NF to understand and test treatments for NF-related tumors. She completed neurology residency at The Mount Sinai Hospital (MSH) and fellowship in neuro-oncology at Memorial Sloan Kettering Cancer Center (MSK), both in New York City. She served as an Attending physician at MSK before moving back to MSH as Assistant Professor to build one of the nation’s few all-ages NF and SWN programs, and to transition her research from the laboratory to clinical trials. She trained in resection of cutaneous neurofibromas (skin bumps associated with NF) in 2021 and offers a monthly resection clinic. In November of 2024, Dr. Brown moved her practice to UAB to follow in the footsteps of Dr. Bruce Korf, the prior Director, and to grow the patient care and clinical trial aspects of our program. She is delighted to be here in Birmingham, Alabama, to deliver proactive and holistic care for her patients.

Girish Dhall, M.D.

Girish Dhall, M.D., is a professor of Pediatrics and currently resides in Birmingham, where he serves as Benjamin Russell Endowed Chair in Pediatric Hematology & Oncology, and Division Director of the Pediatric Hematology-Oncology and Blood Marrow Transplantation Program at UAB and Children's of Alabama. He is Deputy Director of Neurofibromatosis Clinical Trials Consortium and he is titled Senior Scientist at UAB’s O’Neal Comprehensive Cancer Center. He is also Head of the Pediatric Neuro-oncology program. Dr. Dhall currently co-chairs the “Head Start” 4, an international, multi-institutional clinical trial and is also the Chair of the COG’s Young Investigator’s Committee and member of COG CNS Steering Committee. 

Harishanker Jeyarajan, M.D.

Harishanker Jeyarajan, M.D., is an ear, nose, and throat doctor and a plastic surgeon at UAB. He received his medical degree from Monash University Faculty of Medicine and has been in practice for more than 20 years. He specializes in removing tumors from the head and neck as well as performing facial reconstruction and facial reanimation after facial nerve paralysis. He treats both pediatric and adult NF1 and schwannomatosis (including NF2) patients.

Jesse Jones, M.D.

Jesse Jones, M.D. is a board-certified radiologist with neuro-interventional subspecialty training. He performs percutaneous tumor ablation as well as pre-surgical embolization. Dr. Jones' research interests include the genetic and molecular basis of disease as well as biomedical device development.

Laura Katherine Metrock, M.D.

Laura “Katie” Metrock, M.D., is a pediatric neuro-oncologist who treats children with NF1 and schwannomatosis who need medical intervention. She graduated from the Medical College of Georgia in Augusta, completed her pediatric residency training, pediatric hematology-oncology fellowship, and pediatric neuro-oncology fellowship at Emory University in Atlanta, and ultimately joined UAB and Children’s of Alabama in 2018. Dr. Metrock is Director of the UAB Pediatric Neuro-Oncology Fellowship Program and Director of the Alabama Center for Childhood Cancer and Blood Disorders Pediatric Neurofibromatosis Tumor Clinic. She serves as the co-chair of the Quality Assurance Committee for the Neurofibromatosis Clinic Trials Consortium (NFCTC) and course co- director of the national Children’s Tumor Foundation (CTF) Virtual Case Conference. She is also a CTF Clinical Care Advisory Board Contributor. Her research interests are focused on clinical trials for children with tumors associated with NF1 and schwannomatosis (including NF2). Dr. Metrock is a member of the National Comprehensive Cancer Network (NCCN) Central Nervous System Cancers Guidelines Panel.

Renie Moss, MPH

Renie Moss, MPH, lives in Vestavia Hills, Alabama, with her husband of 24 years, Philip Sr. and two children, Philip Jr. (20) and Helen (17). Philip Jr. was diagnosed with neurofibromatosis type 1 in 2011 when a tumor was discovered in his neck. Following her son’s diagnosis, Helen and Philip Sr. were both diagnosed in 2013. Renie is an avid advocate for the neurofibromatosis community and the scientific and medical leaders dedicated to finding effective treatments for neurofibromatosis. She is a former chair of the Children’s Tumor Foundation (CTF) Volunteer Leadership Council and served as patient liaison to the Synodos NF1 Research Consortium. She is also a patient representative on the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration also known as REINS, helping researchers develop standardized response criteria for determining treatment responses in neurofibromatosis. Local to Alabama, Renie provides patient and caregiver perspective by serving on the University of Alabama at Birmingham (UAB) NF Clinic Patient Advisory Board and the UAB Genetic Counseling Program’s Advisory Board and assists in the coordination the annual UAB NF Symposium and Family Day, connecting with newly diagnosed patients and their families to provide support and encouragement. Professionally, Renie serves as the Operations Administrator for the Gregory Fleming James Cystic Fibrosis Research Center at UAB. She holds an undergraduate degree in English and masters degrees in education and public health from UAB.

Tammi Skelton, CRNP

Tammi Skelton, CRNP, is a dedicated nurse practitioner for NF1 and schwannomatosis (SWN, including NF2) children and adults at UAB and Children’s of Alabama. She adores her patients and volunteers her time outside of the clinic to improve the NF and SWN Program and plan the Symposium. Tammi previously worked alongside Dr. Bruce Korf and has since transitioned to working with Dr. Rebecca Brown, where she is studying to remove cutaneous neurofibromas independently.

Deeann Wallis, Ph.D.

Deeann Wallis, Ph.D., is a professor in the Department of Genetics at UAB. She has successfully utilized functional genomics approaches to lead a number of screening and drug discovery/development projects that have resulted in numerous publications, patents, a pre-IND application, and lead compounds ready for clinical trials. Currently, her lab focuses on understanding the function of the Neurofibromatosis Type 1 gene, NF1, and developing mutation directed therapeutics including exon skipping. NF1 is characterized primarily by benign tumors that form along the nerves anywhere in the body, called neurofibromas. While the NF1 gene is a classic tumor suppressor with mutation of both alleles leading to tumor formation, the mechanisms involved in tumorigenesis are still poorly understood. Notably, one of the protein’s functions is to inhibit the RAS signaling pathway, which when left unchecked results in cellular over-proliferation and tumor formation. Her laboratory is currently focused on establishing predictive animal and cell culture model systems to look at the function of the NF1 gene and specific patient mutations. The cell models will be utilized to develop screens to identify drugs to treat NF1. Mouse and rat models will also be utilized to better understand both the function of NF1 and as preclinical models to test new drug therapies.

Erika Walsh, M.D.

Erika Walsh, M.D., is a neurotologist specializing in lateral skull base surgery, implantable hearing devices, and chronic ear disease. She treats the full spectrum of neurotology patients, including children and adults with hearing loss, chronic ear infections and cholesteatoma, vestibular disorders, and benign and malignant tumors of the skull base, with special expertise in and experience with patients with phakomatoses, including neurofibromatosis type I and II, meningiomatosis, and schwannomatosis. A graduate of Harvard Medical School, Dr.Walsh first came to UAB in 2012 as a resident in the Department of Otolaryngology. After completing her neurotology fellowship at the Michigan Ear Institute, she was thrilled to return as faculty in 2019. She is proud to care for a diverse population of patients who hail from the entire southeast region and nationally.

Hotel information

Hilton Birmingham by UAB
808 20th St S, Birmingham, AL
Contact Name: Dexter Agee
Phone: 205-933-9000

Home2 Suites by Hilton Birmingham Downtown
250 18th St S, Birmingham, AL
Contact Name: Anita Estelle
Phone: 205-322-7933

Courtyard UAB (Marriott)
1820 5th Ave S, Birmingham, AL
Contact Name: Philippa Stricklin & Karen Steiger
Phone: 205-254-0004

Mint House
300 18th St S, Birmingham, AL
Contact Name: Staci Rosales
Phone: 205-440-2766

Hilton Garden Inn Downtown Birmingham
250 18th St. S., Birmingham, AL
Phone: 205-322-7937

For additional hotel information: https://www.uab.edu/financialaffairs/procedures/hotel

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