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  • What is NF?
    • TYPES OF NF
      • NF-1
      • NF-2
      • Schwannomatosis
    • LEARNING & RESOURCE CENTER
      • Newly Diagnosed? Start Here
      • the NF Blog
      • NF-1 Educational Resources
      • NF-2 Educational Resources
      • Schwannomatosis Educational Resources
      • REiNS International Collaboration
      • Stay iNFormed Sign Up
      • RDMD NF Registry Sign Up
      • NF Inspire Online Community
    • ABOUT NF NORTH CENTRAL
      • NF North Central Board of Directors
  • Find a Doctor
    • NF CLINICAL CARE OPTIONS
    • Minnesota
    • Wisconsin
    • North and South Dakota
    • Montana and Wyoming
  • Research
    • SCIENTIFIC PAPERS
      • The Network Edge Newsletter
      • Highlighted NF-1 Scientific Papers
      • Highlighted NF-2 Scientific Articles
    • PARTICIPATE IN NF RESEARCH
      • ClinicalTrials.Gov
      • NF Clinical Trials Consortium
      • Other NF Studies
      • RDMD NF Registry
    • NF RESEARCH PROGRAMS
    • PUBLICATIONS
      • Turning Piglets Into Personalized Avatars for Sick Kids
      • To help kids battling a rare disease, scientists forge a genetic link between people and pigs
  • Get Involved
    • EVENTS
      • BAND TOGETHER – A Virtual Concert for NF Research at UW
      • Rock Out to Knock Out NF
      • Links for Lauren
      • #NFStrong Events
      • Run4NF
    • BECOME AN ADVOCATE
      • Why become an advocate?
      • Advocacy Program
      • How Research is Funded
      • Advocacy Toolkit
    • CONNECT WITH US
  • Donate

Monthly Archives: May 2019

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Gregg Erickson: My Perspective as a Neurofibromatosis Parent and Advocate (from the CDMRP)

NF StoriesBy Becky EricksonMay 14, 2019Leave a comment

My son, Gus, was diagnosed with Neurofibromatosis (NF) Type 1 as a baby. Having never heard of NF, my wife, Becky, and I did our research and quickly learned about all the horrifying physical and cognitive complications that NF can bring. And we decided to hope for the best.

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