Tag: genetic disease

Summarizing my life with Neurofibromatosis Type 2

I had someone approach me to write my story to aid in lobbying Congress for research funding Neurofibromatosis (and Neurofibromatosis Type Two) research. The idea piqued my interest because, hey, I’m a writer! I’ve been doing it for so long and have a unique voice in saying things. I knew I couldn’t write a huge piece or an autobiography, but I thought it’d still be an opportunity…

Yeah, well, I had to work in a plea for funding in it, and I couldn’t have more than a page for my story. I could work in issues I’ve dealt with and family plights, but just a page!

I can’t write a story about what I deal with while having the genetic disease NF2 in only a page. Oh, I could summarize things in a bulleted list… but that doesn’t make a true case to politicians to actually give a care.

There’s also that aspect – politicians of the United States of America at the moment – that works against truly trying to coerce federal support toward researching a rare medical disease. After all, there’s a faction that thinks a physical wall is a necessity for national security, and that $5.7 billion is a worthy investment. That doesn’t touch on others who push for federal “aid” for multi-billion dollar conglomerate corporations who need no such help in order to profit.

Yeah, my story, as a short summary and plea for cash, would mean shit to that element of political America. Preventing a disease that affects about one in every 25,000 human beings on the planet is not something that these people are going to be sold on when it comes to listing ailments and hindrances in a few words.

Yet here I’ve written 300 and haven’t said a thing about my story. If a Congressional representative or the United States Senator ever reads these words is not something I expect. Nor do I expect to sell them or readers from the general populous on contributing to the NF Network and helping fund research and support for Neurofibromatosis/Neurofibromatosis Type 2 patients, but whatever. Here’s my story.

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