Upon being diagnosed with a rare disease, there was something that automatically made me feel alone.
Neurofibromatosis (NF), type 2, is incredibly rare. When I was first diagnosed, even those who had heard of NF before, were typically more familiar with type 1. Both types are considered genetic mutations that cause tumors to grow; type 1 causes tumors to grow on and under the skin while type 2 causes tumors to grow throughout the neurological system (brain and spine).
During one of many afternoon visits with my ENT specialist, I asked him if there were support groups for people with NF2 in Colorado. He told me there are only 5 estimated people in the entire state with NF2. That afternoon, he also advised me to stay away from online support groups as “they are generally very negative.” He said, “most people with NF2 have had it for a very long time, and their conditions only get worse.” He commended me for my positive outlook, and said “I want you to keep looking on the bright side.”
Well, I’ve never been one to follow good advice, so I began looking into NF2 groups on social media channels.
Reading through the monstrosities of NF2 was difficult at first, but then it started to compel me to find the “bright side.”
I found Christina Menkemeller.
After realizing how much we had in common, and how similarly we thought, we agreed to meet for ice cream.
It was the first time I’d met someone else with NF2. And, it was empowering!
Meeting her opened the door for me to step even more into the NF Community, and all of the amazing friendships and experiences that came with it.
Shortly after, The Children’s Tumor Foundation invited me to attend a Colorado Rockies game and go on Coors Field to accept a generous donation.
Then, I gathered a team of friends and family to walk a 5K in support of the National Brain Tumor Society.
I also got the opportunity to introduce my oldest son to Ian Desmond, Colorado Rockies outfielder, and advocate for the NF community.
Every time I got involved, I felt the strength of community, and inclined to do more to support the mission to raise awareness and funds for a cure for NF2.
I fell in love with the idea of being cured. And, it motivated me to do something big! So, I gathered a team to help me, and decided to throw my own fundraiser, called Fall for a Cure, to benefit gene therapy and NF2 BioSolutions.
Volunteering my time and energy to do something good for this community and the people I have met is what keeps me hopeful that a cure is within reach. It gives me purpose.
Plus, I’ve never been the type to give up.
This is my story, and it is not over yet.
**To purchase tickets or make a donation, please visit Eventbrite and search Fall for a Cure.