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.

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.

Dr. Couser obtained his bachelor’s degree from the University of Virginia and his Medical Doctorate from the Virginia Commonwealth University School of Medicine (VCU SOM). Dr. Couser’s ophthalmology residency was completed at Howard University where he served as co-chief resident in the last year of his residency. He received fellowship training in pediatric ophthalmology and adult strabismus at Emory University. Dr. Couser received a master’s degree in biotechnology from the Johns Hopkins University and completed a residency in clinical genetics at the University of North Carolina at Chapel Hill. He is one of only a few individuals currently board-certified by both the American Board of Ophthalmology and the American Board of Medical Genetics and Genomics. CV https://www.hopkinsmedicine.org/-/media/wilmer/documents/cvs/couser-cv Research Summary My primary research focus involves the identification and management of genetic eye diseases including rare inherited disorders affecting the eyes. Research and scholarly activities have been an integral component of my career path. I have been the principal investigator on 10 clinical trial/IRB studies and a co-investigator on others, participated with several committees or advisory panels related to research activities. I have been credited with over 120 book chapter, journal article and abstract publications. In addition, I served as the primary author/sole editor for a textbook titled Ophthalmic Genetic Diseases: A Quick Reference Guide to the Eye and External Ocular Adnexa Abnormalities, 1st Edition, published by Elsevier in 2018, which is one of only a few textbooks published in this subject area. I also served as a grant review panelist for the National Eye Institute Career Development Awards. Selected Publications *Couser NL, Masood MM, Strande NT, Foreman AKM, Crooks K, Weck KE, Lu M, Wilhelmsen KC, Roche M, Evans JP, Berg JS, Powell CM. 2015. The phenotype of multiple congenital anomalies- hypotonia-seizures syndrome 1: Report and review. Am J Med Genet Part A 9999A:1–6 *Couser NL, Lambert SR. Botulinum toxin: A treatment of consecutive esotropia in children. Strabismus 2012; 20(4):158-161 Couser NL, Lenhart PD, Hutchinson AK. Augmented Hummelsheim procedure to treat complete abducens nerve palsy. J AAPOS 2012;16(4):331-5 *Natario L. Couser, Maheer M. Masood, Arthur S. Aylsworth, and Roger E. Stevenson. Ocular manifestations in the X-linked intellectual disability syndromes. Ophthalmic Genet. 2017, Jan 23:1-12 *Couser NL, Brooks BP, Drack AV, Shankar SP. The evolving role of genetics in ophthalmology. Ophthalmic Genet. 2021 Jan 12:1-4. doi: 10.1080/13816810.2020.1868011. . His top areas of expertise are Epicanthal Folds, Strabismus, Brown Syndrome, and Hypotonia.

Sonia Krish is a Neurologist in Columbia, Maryland. Dr. Krish has been practicing medicine for over 17 years and is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Cervical Myelopathy, Hemangioblastoma, Invertebral Disc Disease, and Spinal Tumor.

Jonathan Johnson is a Neurologist in Columbia, Maryland. Dr. Johnson is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Cervical Myelopathy, Hemangioblastoma, Spinal Tumor, and Subependymoma.

Jason Shen is a Neurologist in Columbia, Maryland. Dr. Shen is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Cervical Myelopathy, Dysembryoplastic Neuroepithelial Tumors (DNET), Brain Stem Cancer, and Primitive Neuroectodermal Tumor (PNET).

Gowri Lakshminarayan is a Neurologist in Columbia, Maryland. Her top areas of expertise are Cervical Myelopathy, Spinal Tumor, Subependymoma, and Moyamoya Disease.

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.

Carlene Edwards is a Nurse Practitioner in Columbia, Maryland. Her top area of expertise is Neurofibromatosis Type 1 (NF1).

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. 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.

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.

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.

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.

Sophia Strike, M.D., is a hand surgeon serving patients in Bethesda, Baltimore, and Columbia, Maryland. She specializes in adult and pediatric conditions of the hand, wrist and elbow, including congenital deformities, nerve injuries and nerve compression, arthritis and fractures. She also has special training in benign and malignant hand and wrist tumors in children and adults. Dr. Strike has completed her fellowship in hand surgery at the Brigham and Women’s Hospital, prior to which she worked and trained as a resident at the Johns Hopkins Department of Orthopaedic Surgery. During her training, Dr. Strike received an award for clinical excellence and co-authored numerous research publications in the field of hand surgery. Dr. Strike is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). Her top areas of expertise are Carpal Tunnel Syndrome, Ganglion Cyst, Adult Soft Tissue Sarcoma, and Bone Tumor.

Michael Carper, M.D. is an ophthalmologist in Baltimore, Maryland specializing in diplopia, optic neuropathy, multiple sclerosis and idiopathic intracranial hypertension. He has particular interest in stroke affecting visual function, idiopathic intracranial hypertension, and Leber Hereditary Optic Neuropathy. Dr. Carper completed his residency in neurology at West Virginia University. A native of North Carolina, he takes pleasure in his deep ties to the Mid-Atlantic and Appalachian regions and is privileged to serve the Baltimore area. Dr. Carper is an avid explorer and during his personal time enjoys trying new cuisines, or enjoying the outdoors on a hike or kayaking trip with his family. Dr. Carper is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis Type 1 (NF1). His top areas of expertise are Oculomotor Apraxia Cogan Type, Increased Intracranial Pressure, Chemosis, and Optic Neuritis.