Neurofibromatosis Northeast

Supporting the NF community in New England and New York

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You are here: Home / Archives for Medical & Science News from Neurofibromatosis Northeast

Latest NFNE Medical & Science News & Information

Gene Therapy paper published in NATURE

Authors: Sherif G. Ahmed, Abdelanabi Ahmed, Mohamed Doha, Gary J. Brenner “Schwannoma gene therapy by adeno-associated virus delivery of the pore-forming protein Gasdermin-D” Abstract Schwannomas are peripheral nerve sheath tumors associated with three genetically distinct disease entities, namely sporadic schwannoma, neurofibromatosis type-2, and schwannomatosis. Schwannomas are associated with severe disability and in cases lead to […]

Marker for skin tumors has been found

  “For the first time we have a mouse model that develops different types of neurofibromas inside the body and on the skin, just like in humans. Because of this model, we now know the exact origin of these two types of tumors. If you know where the tumor begins, and you know the end […]

Kim Bischoff, Consumer Representative for NF on the CDMRP Panel

Kim Bischoff, Executive Director of the NF Network, is a member of the Integration Panel for the Neurofibromatosis – Congressionally Directed Medical Research Program (CDMRP) through the Department of Defense. Watch the video below as Kim shares her experiences as a mother and as an advocate.

Clinical Care Guidelines for Adults with NF1

A group of experts has concluded years of work to develop clinical care guidelines for adults with NF1. The  results have been published by Genetics in Medicine, and are officially sponsored by the American College of Medical Genetics. “Care of adults with neurofibromatosis type 1: a clinical practice resource of the American College of Medical […]

Resiliency for NF Study

Are you feeling stressed? Are your NF symptoms bothersome? The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2 programs that teach stress and symptom management skills for adults with NF1, NF2, or schwannomatosis. The Department of […]

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Upcoming Events

  • Yoga in Solidarity for World NF Awareness Day on May 17, 2022 4:30 PM
  • Steps2Cure NF Walk/Fun Run – Wakefield MA on May 22, 2022 11:00 AM
  • Steps2Cure NF Walk – Western NY on June 4, 2022 12:00 PM
  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 8:00 AM

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In loving memory of Richard Klouda, 1964 – 2017

NF Northeast Continues to Need Your Support

During the COVID-19 pandemic all of our events were cancelled or postponed. But, our programs that serve NF patients and families were not stopped. We continued to be here for our community, and now we continue to need your support. Thank you!

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Events

  • Yoga in Solidarity for World NF Awareness Day on May 17, 2022 4:30 PM
  • Steps2Cure NF Walk/Fun Run – Wakefield MA on May 22, 2022 11:00 AM
  • Steps2Cure NF Walk – Western NY on June 4, 2022 12:00 PM
  • Falmouth Road Race – Team NF Northeast on August 21, 2022
  • 11th Coast to the Cure on September 10, 2022 8:00 AM

Introducing Sharon Klein

We are pleased to announce that Sharon Klein has joined Neurofibromatosis Northeast as our Executive … [Read More...]

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