Category: Uncategorized

Michael Rose is a husband, father, and Licensed Professional Counselor. Michael and I crossed paths in the course of our hikes through the NF Wilderness. I am personally a big fan of Michaels, being married to one myself, and I deeply respect the way that Michael supports and empowers his wife (whom you might recognize…

I was diagnosed with NF the day that I was born. Arriving with 6 tumors coming out of your mouth, multiple cafe au lait macules, hypo-pigmented spots, and two diagnosed family members makes it pretty easy. I have been saying “Neurofibromatosis” and explaining what it is to people who would ask about my CAL macules…

When we find the nexus of our own curiosities, personal needs, and the needs of our community, we find work that is not drudgery, but deeply satisfying. We find that in our view, no longer looms only our lack, pain, or frustrations, but opportunity to help make the world better. We find we can participate…

If you have ever uttered these words to someone, then you’re in time out buddy.  NF is vicious. Having a dyslexic chromosome 17 or 22 – meaning there is a misspelling in the gene which causes a loss of proteins that carry very important information, is what results in NF1, NF2-SWN, or SWN – the…

I tend to ruminate – my mind is often turning around ideas, problems, solutions, and even about people.  While I deeply care about people, I am also very much an introvert and “peopling” can be very draining. I am always trying to “read the room” and figure people out.  Sometimes it turns me into a…

I talk a lot about “Loving my Neighbor.” This ideal is what drives me in life every day and in the realm of NF advocacy.  All of us need community, and as much as I want to be a strong, independent person, and do things on my own, I know I need a community. Loving…

Hello and welcome to my blog! I originally shared the following story this past October in NYC at an event held by NF Northeast…. “In her shoes, a Monday in my world” A small brown bird with disproportionately long, thin legs runs hurry-scurry across the pebbled pavement. Music deemed too loud by my watch pounds…