Dr. Jaishri Blakeley is the Marjorie Bloomberg Tiven Professor of Neurofibromatosis in Neurology, Oncology, and Neurosurgery at Johns Hopkins School of Medicine, director of the Johns Hopkins Comprehensive Neurofibromatosis Center and director of the Neurofibromatosis Therapeutic Acceleration Program (NTAP). She is an active clinician-scientist specializing in the care of people with NF1, NF2, LZTR1, SMARC1 schwannomatoses, and primary brain tumors. Her research expertise in the development of clinical trials for nervous system tumors and specifically, early clinical-translational studies including tumor pharmacokinetic and pharmacodynamic investigations, imaging biomarkers for rare nervous system tumors, and incorporation of patient-focused, functional endpoints into efficacy studies. She has been the national or international leader of 7 clinical trials focused on therapies for glioblastoma, NF1 and NF2. In 2012 she cofounded the NTAP to dramatically shift the landscape of NF1 via necessary, efficient, and expert discovery, translational and clinical research. NTAP focuses on therapeutics, fosters collaboration, facilitates open and timely sharing of results, and streamlines the research process to accelerate therapies for plexiform and cutaneous neurofibromas. Through NTAP, Dr. Blakeley has supported and collaborated with more than 80 laboratories and research teams across the globe enabling meaningful therapeutic development for NF1-associated neoplasms and supporting the development of an exceptional community of clinician scientists focused on NF1 via the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. Her research and programmatic efforts are all in the service of improving outcomes for the patients with NF1, NF2, schwannomatosis, and primary brain cancer for whom she is honored to provide care. Dr. Blakeley is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Neurofibromatosis, Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis Type 1 (NF1), and Laminectomy.

Carlos Romo, M.D., is a neuro-oncologist in Baltimore, Maryland. Dr. Romo specializes in the diagnosis and treatment of brain tumors, including glioblastoma, astrocytomas, oligodendrogliomas, neurofibromas, and schwannomas among others. Dr. Romo earned his medical degree from the School of Medicine and Health Sciences at Tecnológico de Monterrey in Mexico and completed his Neurology residency at the University of Arkansas for Medical Sciences, where he served as chief resident. He then completed a Neuro-oncology clinical and research fellowship in a joint program between The Johns Hopkins University and the National Institutes of Health. Dr. Romo additionally trained as a clinical pharmacology fellow at The Johns Hopkins University and completed training on clinical cancer research at the University of Texas MD Anderson Cancer Center. In his research, Dr. Romo studies drug pharmacokinetics and the blood-brain barrier, and investigates better ways to reach tumors in the central nervous system. Dr. Romo also studies treatments for patient with neurofibromatosis. In addition to patient care and research, Dr. Romo teaches and mentors medical and undergraduate students to help develop a future generation of neurologists. Dr. Romo is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Schwannomatosis, and Astrocytoma.

Dr. Christine Pratilas is a pediatric medical oncologist at the Sidney Kimmel Comprehensive Cancer Center and Associate Professor of Oncology, Pediatrics & Cellular and Molecular Medicine at the Johns Hopkins University School of Medicine. She joined the Hopkins pediatric sarcoma team in 2014. Dr. Pratilas received her undergraduate degree in Biology from Drew University in New Jersey and her medical degree from UMDNJ - Robert Wood Johnson Medical School (now Rutgers University), where she also completed her internship and residency from 1999 to 2002. From 2002 to 2005 she was a fellow in hematology and oncology in the Memorial Sloan Kettering Cancer Center (MSKCC) Department of Pediatrics, and in the Department of Pediatric Hematology and Oncology at New York Weill Cornell Medical Center. She was a postdoctoral research fellow in Dr. Neal Rosen’s Molecular Oncogenesis Laboratory at MSKCC. From 2006 to 2014 she was attending in Pediatric Oncology at MSKCC, specializing in developmental therapeutics & sarcoma. She has been the director of the pediatric sarcoma program at Hopkins since 2018. Dr. Pratilas focuses her research on cancer-associated pathways and signal transduction, which involves figuring out how a cell’s internal molecular pathways work, and how those pathways can be molecularly controlled. This knowledge is the basis for developing promising new molecularly targeted cancer therapies, which is the focus of Dr. Pratilas’s research. Among her important scientific contributions is advancing our understanding of how certain proteins that can be mutated in cancer, known as RAF kinases (specifically BRAF), affect a cancer cell’s behavior. The research in Dr. Pratilas' laboratory is focused on RAS signal transduction pathways, concentrating on pediatric sarcomas such as rhabdomyosarcoma and malignant peripheral nerve sheath tumors, in order to develop novel therapeutics for children with these tumors. Dr. Pratilas is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Adult Soft Tissue Sarcoma, and Osteotomy.

Brigitte Widemann is a Pediatric Hematologist Oncology provider in Bethesda, Maryland. Dr. Widemann is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Malignant Peripheral Nerve Sheath Tumor, Adult Soft Tissue Sarcoma, and Thyroidectomy.

Dr. Ahlawat earned a Bachelor of Arts with magna cum laude at New York University. She completed both her Medical Degree as well as residency training in diagnostic radiology at Rutgers University’s Robert Wood Johnson Medical School in New Brunswick, NJ. Dr. Ahlawat completed her Pediatric Radiology Fellowship at the Children’s National Medical Center in Washington, DC and went on to Johns Hopkins University in Baltimore, MD to do a Fellowship in musculoskeletal radiology. After completion of her fellowship, Dr. Ahlawat joined as faculty in the Diagnostic Division of the department of Radiology at the Johns Hopkins University. Currently, she is an Assistant Professor in the Johns Hopkins University Department of Radiology and Radiological Science. Dr. Ahlawat’s expertise is Diagnostic Radiology with additional training in pediatric and musculoskeletal radiology. Dr. Ahlawat specializes in high resolution magnetic resonance (MR) imaging of peripheral nerves, specifically detection and characterization of peripheral nerve injury; MR imaging of peripheral nerve tumors and peripheral nerve tumor syndromes; whole body MR imaging in the setting of peripheral nerve tumor syndromes; and advanced MR techniques such as quantitative diffusion weighted imaging and apparent diffusion coefficient mapping in characterization of bone and soft tissue tumors. Dr. Shivani Ahlawat also serves as the Director of the Musculoskeletal Fellowship Program. Dr. Ahlawat is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Schwannomatosis, Neurofibromatosis, Neurofibromatosis Type 1 (NF1), and Neurofibromatosis Type 2 (NF2).

Dr. Allan Belzberg is a neurosurgeon specializing in surgery of the peripheral nervous system. As Director of Peripheral Nerve Surgery at Johns Hopkins in Baltimore, he treats tumors including schwannoma, neurofibroma and nerve sheath tumor. Dr. Belzberg performs surgical repair of nerve damage caused by trauma as well as neurosurgery on carpal tunnel, peroneal nerve and other peripheral nerve conditions. Dr. Belzberg also directs the Brachial Plexus and Peripheral Nerve Clinic at the Kennedy Krieger Institute and co-directs the Neurosurgery Pain Research Institute at Johns Hopkins Hospital. Dr. Belzberg currently sees patients at the Johns Hopkins Outpatient Center located in Baltimore on Wednesdays and the Green Spring Station location on Fridays. Dr. Belzberg is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Schwannomatosis, Neurofibromatosis, Thoracic Outlet Syndrome, Osteotomy, and Rhizotomy.

Nurse practitioner Shannon Langmead specializes in neurofibromatosis and is the clinic coordinator of the Johns Hopkins Comprehensive Neurofibromatosis (NF) Center. She evaluates and manages patients with NF1, NF2 and Schwannomatosis. Her special interests include pain management and developing social support networks for patients who have NF. Shannon earned bachelor’s degrees in Spanish and nursing from Saint Francis University in Pennsylvania and Villa Julie College in Maryland, and completed her master’s degree in nursing at The Johns Hopkins University School of Nursing. She has worked as a bedside nurse in neurology and neurosurgery at The Johns Hopkins Hospital and as a part-time clinical faculty member for The Johns Hopkins University School of Nursing. Ms. Langmead is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Neurofibromatosis, RASopathies, Neurofibromatosis Type 1 (NF1), and Legius Syndrome.

Dr. Laura M. Fayad serves as the Chief of Musculoskeletal Imaging. She is a Professor in the Johns Hopkins University Department of Radiology and Radiological Science, Department of Oncology, and Department of Orthopaedic Surgery. Dr. Fayad is also the Director of the Translational Research Program in the Department of Radiology. Dr. Fayad earned a Bachelor of Science at the Massachusetts Institute of Technology, a Master of Science at Stanford University, and M.D. C.M. degrees at the McGill University Faculty of Medicine. She completed residency training at Columbia University and MRI Fellowship at Thomas Jefferson University. She specializes in diagnostic and interventional musculoskeletal radiology. In addition to routine sports medicine and spine applications, Dr. Fayad protocols and interprets specialized examinations in the areas of peripheral nerve imaging, tumor imaging, and rheumatology. Her primary area of research focuses on novel imaging techniques for musculoskeletal tumors, with her work including well over 100 publications that have been cited more than 1,500 times. Dr. Fayad is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Schwannomatosis, Neurofibromatosis, Liposarcoma, and Neurofibromatosis Type 2 (NF2).

Dr. Kathryn Lemberg is an Assistant Professor of Oncology and Pediatrics at the Sidney Kimmel Comprehensive Cancer Center. Her research, conducted with Johns Hopkins Drug Discovery, focuses on tumor metabolism and the development of new metabolic inhibitors to treat cancer. She has investigated novel glutamine antagonists in preclinical models of RAS-driven solid tumors. She is also interested in the effects of tumor metabolism on patient growth and development. Dr. Lemberg completed pediatrics residency training at Johns Hopkins and pediatric hematology-oncology fellowship training in the joint Johns Hopkins/National Cancer Institute program. She received her M.D. and Ph.D. degrees from the Medical Scientist Training Program at Columbia University in New York, where her graduate research focused on ferroptosis, a novel oxidative cell death in cancer models. Dr. Lemberg sees pediatric and young adult sarcoma patients as part of the sarcoma team and has additional clinical focus on neurofibromatosis type I related solid tumors. Dr. Lemberg is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, and Adult Soft Tissue Sarcoma.

Aerang Kim is a Pediatric Hematologist Oncology provider in Bethesda, Maryland. Dr. Kim is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, and Rhabdomyosarcoma.

Chetan Bettegowda is the director of the Johns Hopkins Department of Neurosurgery. He offers comprehensive treatments for adult patients with benign and malignant brain tumors, specializing in the treatment of patients with primary brain tumors such as gliomas, meningiomas and pituitary tumors. He performs both open surgery and stereotactic radiosurgery for patients with metastatic tumors to the brain, and also provides stereotactic radiosurgery for other neurological disorders, including spinal tumors, trigeminal neuralgia and skull-base tumors. Dr. Bettegowda is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Trigeminal Neuralgia, Astrocytoma, Glioblastoma, Rhizotomy, and Microvascular Decompression.

Chad Gordon is a Plastic Surgeon in Baltimore, Maryland. Dr. Gordon is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Neurofibromatosis, Legius Syndrome, Neurofibromatosis Type 1 (NF1), Osteotomy, and Bone Graft.

Mari Groves is a Johns Hopkins pediatric neurosurgeon who cares for children with brain and spinal cord tumors (benign and cancerous), skeletal dysplasia, and spinal deformities such as neuromuscular and early scoliosis. She also sees patients diagnosed with Chiari malformations, spasticity and epilepsy. She specializes in treating patients with all types of spina bifida, including myelomeningocele. As part of the Johns Hopkins Center for Fetal Therapy, she is an expert in prenatal closure techniques such as minimally invasive fetoscopic repair of myelomeningocele (when the spina bifida defect is repaired before birth). Offering a transitional practice model of care, she follows patients diagnosed with spina bifida from birth to adulthood. Dr. Groves chose to pursue neurosurgery because it allows her to treat patients with complex conditions and help improve the quality of children’s lives. Her research interests focus on pediatric spinal disease and how surgical intervention can impact growth and neurological function during a child’s life. She is committed to building programs that support patients with congenital disorders as they age. Pediatric patients often age out of existing programs and have difficulty locating physicians and treating teams that understand their conditions. At Johns Hopkins, we have a unique ability to provide this type of comprehensive care. Dr. Groves earned her medical degree from the Vanderbilt University School of Medicine in 2007. She completed residency training in 2014 at The Johns Hopkins Hospital, where she remained for a neurosurgery fellowship, which she finished in 2015. She also completed a spinal deformity fellowship at Shriners Hospitals for Children in Philadelphia. Dr. Groves is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Spinal Tumor, Myelomeningocele, Tethered Cord Syndrome, Osteotomy, and Laminectomy.

Dr. Fisher is an associate professor of plastic surgery in the Johns Hopkins Department of Plastic Surgery. His areas of clinical expertise include burn surgery, burn reconstruction, craniofacial surgery, and reconstructive microsurgery. He serves as the Director of the Johns Hopkins Bayview Adult Burn Center. Committed to acute and reconstructive burn care of the highest quality, Dr. Fisher completed extensive training at multiple leading centers. These included a Burn Fellowship at the Shriners Hospital for Burns in Galveston, a Plastic Surgery Residency at Duke University, a Craniofacial Fellowship at the Hospital for Sick Children in Toronto, and a research fellowship at Harvard. Throughout his career Dr. Fisher has brought the full breadth and depth of his training to care for patients with the most complex injuries and deformities. From 2014 to 2022 he was on the faculty of the University of Iowa where he served in the burn unit, led the craniofacial team, and served the hand trauma team. Recognizing that complex injuries need coordinated care, he developed the Complex Face Group at Iowa to coordinate multiple specialty collaboration. Burns cause disfigurement, disability, and death particularly among the poor in the US and across the globe. Dr. Fisher’s research interests include improving prevention wherever burns happen, improving acute and reconstructive outcomes, and strengthening healthcare systems in the US and abroad in the face of burn and other disasters. His research interests also include wound healing and scar for burns and trauma. He has been a national and international leader in burn care. He founded and chaired the American Burn Association Committee on Reconstruction. He also founded and continues to lead the ABA series of burn reconstruction courses. He is frequently invited to speak internationally and serves actively in burn-related humanitarian agencies. Throughout his career, Dr. Fisher has emphasized the importance of a holistic approach seeking the restoration of not only physical health, but emotional recovery, social connection, and work reintegration of his patients. Dr. Fisher is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Melanoma, Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Osteotomy, and Bone Graft.

Adam Levin, MD, joined the Johns Hopkins Department of Orthopaedic Surgery as an assistant professor in orthopaedic oncology. Dr. Levin comes to Johns Hopkins after working as an orthopaedic oncologist at the North Shore/LIJ Health System in New York. He completed his residency in orthopaedic surgery at Long Island Jewish Medical Center, and a fellowship in orthopaedic oncology at the Memorial Sloan-Kettering Cancer Center. Dr. Levin offers care and consultations for adults and children with bone and soft tissue tumors of the pelvis and extremities. He has extensive experience in performing limb-sparing and complex extremity reconstruction surgeries. Dr. Levin has a special interest in surgical palliation and biologic reconstruction. Dr. Levin is a member of the American Academy of Orthopaedic Surgeons and the Musculoskeletal Tumor Society. Dr. Levin is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Adult Soft Tissue Sarcoma, Osteosarcoma, Ollier Disease, Hip Replacement, and Osteotomy.

Dr. Cohen is Director of Pediatric Neuro-Oncology and Clinical Director of the Division of Pediatric Oncology at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. He received his undergraduate degree at Brown University and earned his MD at the Upstate Medical University, in Syracuse, NY. He did his general Pediatric Residency and Chief Residency at the University of Colorado and completed his Pediatric Hematology/Oncology Fellowship at Johns Hopkins. He has served on the faculty since 1994. His research centers on clinical trials of novel therapeutics for children with brain tumors. Dr. Cohen is co-chair of the High-Grade Glioma committee for the Children's Oncology Group and in that capacity has a particular research interest in the development of therapeutics for the treatment of infiltrating gliomas. He serves on the scientific advisory board for a number of organizations including St. Baldricks and the Childhood Brain Tumor Foundation. He is on the editorial board for PDQ with responsibility for authorship of the pediatric CNS brain tumor summaries. The Pediatric Neuro-Oncology program conducts a broad range of research centered primarily around the development and testing of novel therapeutics for children with brain tumors. The multidisciplinary nature of this work translates into continual collaboration with specialists in pediatric neurosurgery, radiation oncology, neuropathology, neuroradiology, neurology, neuro-ophthalmology, neuropsychology, and other related disciplines. Dr. Cohen is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Glioma, Brain Stem Cancer, Medulloblastoma, Embryonal Tumor with Multilayered Rosettes, and Bone Marrow Aspiration.

Carl E. Stafstrom is a pediatric neurologist, caring for children with epilepsy. Dr. Stafstrom received his medical degree from the University of Washington School of Medicine in Seattle, with residencies at the University of Washington Medical Center and Tufts New England Medical Center, as well as fellowships at Harvard for neurology research and Boston Children’s Hospital in clinical neurophysiology, electroencephalography, and epilepsy. Dr. Stafstrom previously served as Professor of Neurology and Pediatrics at the University of Wisconsin-Madison School of Medicine and Public Health and Chief of Pediatric Neurology at American Family Children’s Hospital at UW Madison. Dr. Stafstrom is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Epilepsy, Seizures, West Syndrome, Endovascular Embolization, and Deep Brain Stimulation.

Jennifer Chu is a Neurologist in Columbia, Maryland. Dr. Chu is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Cervical Myelopathy, Spinal Tumor, Hemangioblastoma, Dysembryoplastic Neuroepithelial Tumors (DNET), and Deep Brain Stimulation.

As instructor of oncology and pediatrics, Llosa’s research focus is the immunotherapy of sarcomas. My research focuses on understanding how the immune system interacts with cancer cells from sarcoma tumors. Sarcoma is a type of cancer that can occur in various locations in the body. Sarcoma is the general term for a broad group of cancers that includes tumors that form in the bones and in the soft (also called connective) tissues. Sarcomas affect people of all ages and some, such as Rhabdomyosarcoma, Neuroblastoma, Ewings sarcoma and Osteosarcoma, are more common in children and young adults. Treatments for sarcoma vary depending on tumor type, location and other factors. I concentrate in the immunotherapy of sarcomas. Immunotherapy (also called biologic therapy or biotherapy) is a type of cancer treatment designed to boost the body's natural defenses to fight the cancer. It uses materials either made by the body or in a laboratory to improve, target, or restore immune system function. Immunotherapy works by stopping or slowing the growth of cancer cells, stopping cancer from spreading to other parts of the body, or helping the immune system increase its effectiveness at eliminating cancer cells. There are several types of immunotherapy, including monoclonal antibodies, non-specific immunotherapies, and cancer vaccines. My specific area of interest is the use of drugs that target immune system checkpoints. The immune system has checkpoints to keep itself from attacking other normal cells in the body. Cancer cells sometimes take advantage of these checkpoints to avoid being attacked by the immune system. CTLA-4 and PD-1/PD-L1 are checkpoint molecules found on immune system cells (T cells) that can be blocked with drugs leading to a general raise in the immune system of the patients which helps it attack cancer cells. These types of drugs are currently being given to patients with melanoma (skin cancer), lung cancer and kidney cancer with great success and they have been found to shrink advanced tumors in many people. The best part of the treatment is that many of these tumor responses have been long-lasting so far, and the side effects are generally less serious than when using chemotherapy. Larger clinical trials are now studying both drugs, both alone and/or in combination with other treatments. My task is and will continue to be using the same type of approach for attacking sarcomas and hopefully obtained the very promising results and long lasting responses observed with the use of immune checkpoint inhibitors in other types of cancer. Dr. Llosa is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Adult Soft Tissue Sarcoma, Osteosarcoma, Malignant Peripheral Nerve Sheath Tumor, Ewing Sarcoma, and Bone Marrow Transplant.

Brock Lindsey, M.D., is an orthopaedic surgeon specializing in orthopaedic oncology. He treats children and adults with all types of bone and soft tissue sarcomas. Dr. Lindsey has expertise in nanoparticle delivery of immunotherapy, immunodiagnostics as a novel treatment for osteosarcoma, as well as complex reconstruction after amputation, including osseointegration. Dr. Lindsey earned his medical degree from the University of Cincinnati. He then completed an orthopaedic surgery residency at West Virginia University’s (WVU) J.W. Ruby Memorial Hospital, becoming the department’s first to complete a research fellowship during residency. Dr. Lindsey also pursued a fellowship in musculoskeletal oncology at the University of Pittsburgh Medical Center (UPMC) and UPMC Children’s Hospital before returning to WVU Medicine as an attending physician. During his 12 years at WVU Medicine, Dr. Lindsey created programs in musculoskeletal oncology and adult reconstruction as well as a multidisciplinary amputation clinic. He also led a musculoskeletal research laboratory into the national rankings for federal funding for orthopaedic surgery departments. His research focuses on improving treatment strategies for metastatic osteosarcoma and exploring human/machine interfaces for amputees. His work has been published in local, national and international basic science and clinical research journals. Dr. Lindsey has experience mentoring and training students at all levels from undergraduate and graduate students to postdoctoral positions. He won Press Ganey’s “Top Provider” award every year between 2013 and 2018. He also founded ICaPath, a biotech startup derived from his laboratory research that is currently working toward a first in-human clinical trial. Videos Brock Lindsey, M.D.Orthopaedic Oncologist OsseointegrationQ&A with Dr. Brock Lindsey. Dr. Lindsey is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Bone Tumor, Adult Soft Tissue Sarcoma, Osteosarcoma, Hip Replacement, and Knee Replacement.