Columbia Neurology, Neurosurgery, OBGYN and Pediatrics Host 1st Annual NF Patient Symposium

On Nov 6^th, Columbia’s Departments of Neurology, Neurosurgery, OBGYN and Pediatrics came together with leading faculty and experts to host its first Annual NF Patient Symposium at Columbia Medical Center’s Vagelos Education Center. Neurofibromatosis (NF) “is a genetic condition that places patients at risk for a variety of cancers, including brain and spinal cord tumors. There are three types of neurofibromatosis: neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), and schwannomatosis. NF1 is diagnosed during childhood, while NF2 and schwannomatosis are diagnosed in early adulthood."  The symposium was an opportunity to share critical information with families as well as provide access to the entire multidisciplinary team that is available to them throughout their care at Columbia.

This program was led by Dr. Gurcharanjeet “Bonnie” Kaur who currently serves as Director of the Columbia’s Neurofibromatosis Program. 

Dr. Taemin Oh presented on how NF-1 affects the spine, focusing on treatment options for scoliosis in NF-1. Says Dr. Oh, “Scoliosis can be seen in up to 10-30% of NF-1 patients, and come in two varieties: non-dystrophic versus dystrophic curves. The former can be treated similarly to idiopathic scoliosis, but the latter curve type usually requires earlier intervention due to the natural history of rapid progression. While these operations carry risks, safety is always the number one priority and these surgeries can be extremely rewarding for patients.”  

Following Dr. Chris Winfree then shared his work on pediatric peripheral nerve tumors. He is the only board-certified neurosurgeon in NYC who operates on this type of tumor. Dr. Winfree shared, "Thank you to Dr. Kaur for putting together this meeting. In the past few years, her hard work has built Columbia’s Neurofibromatosis Center into an outstanding center for patient care. This meeting was an amazing opportunity for us to not only present our work within the field of neurofibromatosis, but to reconnect with many of our patients who attended the conference. Many of them have suffered terribly with this disease, and to hear how they have been helped by physicians who work in this field is heartening. It was also fascinating to learn what some of our collaborators in this domain are doing as well."

The focus moved to the topic of genetics with presentations from Dr. Sinem Karipcin, who serves as Director of the Pre-Pregnancy Genetic Program and Dr. Jose Morales Corado, Assistant Professor of Pediatrics, Clinical Genetics showcasing the latest in their respective fields with research findings on NF.  Closing out the program, Columbia social workers Nicole Ross from Neuro-Oncology and Caitlin McCarthy from Stroke, Cerebrovascular Neurology who shared valuable resources for families to support them during a challenging time.

The Columbia Teams were honored to also be joined by Dr. Brigid Garelik who currently serves as Chief Medical Officer for the Children's Tumor Foundation, the leading non-profit with a mission to drive research, expand knowledge, and advance care for the NF community. 

Learn more via https://www.ctf.org/news/2023-top-ten-advancements-in-nf-research/.