NF Stories

Dedicated Family

Erin and Jonathan are big on raising awareness for neurofibromatosis and being advocates for NF Midwest. The two have a young son, Cash, with NF.  In a  video below they discuss more about their son, NF Midwest, and neurofibromatosis. Many may relate to how Erin and Jonathan feel about Cash’s diagnosis and possible future.

The family is truly dedicated to the NF cause. Last year they were instrumental in getting us a grant through the Discount Tire’s “Driven to Care” Program.

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
    Karissa Haberkamp Active Studies

  • 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
    Jennifer Bulandr General

Responses

Respond

Your email address will not be published. Required fields are marked *