Marissa- A Face of NF

Hi! I was diagnosed with neurofibromatosis type 1 when I was 3 years old.  I am the only one in my family that has it. I’ve had two major surgeries, countless appointments, MRIs, horrible headaches, and struggles with schoolwork and friendships…all from having NF. It sucks, but it will not define me and it will not prevent me from living my life!

-Marissa

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Recent Posts

  • Barriers to Healthcare Access and Psychosocial Experiences in Adults with Neurofibromatosis Type 1

    Offered by: University of Colorado AnschutzConducted by: Katelyn Glowinski, genetic counseling student, master’s program This research study is designed to gain a better understanding of healthcare barriers faced by adults with Neurofibromatosis Type 1 (NF1), as well as evaluate any associations between these barriers and your self-reported neuropsychiatric or mental health status. If you join... Read More
  • Where Belonging Can Lead: Rachel’s Journey with NF Midwest 

    Rachel was 13 when she first attended Camp NF.  At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF.  “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand... Read More

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