Photos and text used with permission of
I was diagnosed with neurofibromatosis type 2 (NF2) at the age of 9 years old subsequent to my father's diagnosis of the same condition in his early 40s. The disease has affected me, and my family, in many ways - financially, emotionally, physically, and tragically. Between my sister, my father, and me, we have undergone a total of 18 major surgeries, which have resulted in deafness, paralysis, stroke, and death. NF2 has left me with deficits I face every day, from learning disabilities to the challenges of daily morning routines that others perceive as easy tasks.
I have been involved in NF Midwest for the last 17 years or so. My initial involvement began with the NF Walk for a Cure, where my family and I walked and raised money for NF research. This has evolved to referring others afflicted with NF to specialists (i.e., neurologists, neurosurgeons, and other doctors) in their respective region. Moreover, I teach lay individuals about NF and the daily plight of those with this disease.
I first heard of the Neurofibromatosis Research Program from my mother, who had served on the panel for a number of years. The idea of medical professionals and advocates working together in one room discussing research specifically dealing with NF was intriguing to me-so much so, that I agreed to participate in the 2013 peer review of applications to this Department of Defense research program. The meeting was initially a bit overwhelming; however, afterwards, I was humbled by the interaction with those medical professionals who actively work with this disease every day. More importantly, the meeting gave me hope and reassurance that researchers who focus on this disease are out there and receiving funding through the Army.
I highly recommend that individuals afflicted with this disease get involved and become consumer advocates. I cannot begin to describe how important it is for an individual suffering from this disease to become actively involved-and there is no better place than this organization to start.
Last updated Thursday, September 17, 2020