I need to create a remote lifestyle business to fund a nonprofit outreach/awareness campaign for my inherited neuromuscular disease, Charcot Marie Tooth (CMT). Don’t LOL it’s an odd name for a serious nerve disease that wastes the muscles of the feet, legs, hands & arms. It affects 2.6 million people worldwide. The MDA and two other organizations already collect money for research and many services and resources that I and others like me greatly appreciate.
Our disorder often has a very sneaky onset and can appear at virtually any age and then WHAM! A life can become so painful, awkward, and cumbersome. In the absence of a known family history like mine, many people are accused of or consider thee disease to be one of the mind. You feel if you just fight hard enough you can overcome this disorder that was once diagnosed as “laziness” and “stork legs” referring to the most common, obvious symptom of wasting in the lower legs.
If it was just cranky old men like me bein affected, I would not mind so much. Online though, I have learned of so many other people including lil ones, young men & woman, older folks…no one is really safe though the probability is very low if it’s not apparent in your family. Not everyone has knowledge of their genetic family either.
Whereas it used to be a lack of information, the internet has put knowledge at the fingertips. Misdiagnosis an inappropriate, even damaging, treatments is a major problem and that old cliché “awareness” is the key. I wish to reach out to 31 million mixed martial arts (MMA) fans who might be missin the telethons and parlay the mission into a personal advocacy and support service for my “brothers and sisters” with CMT.
I found an article http://onforb.es/QSfv6S about 7 reasons to choose lifestyle over startup business. It was a revelation for me as the “jack of all trades and master of none”. I am not interested in bein wealthy for the sake of bein wealthy and that has been a weight as long as I believed it was the only reason. This article and my recent “calling” have shown me a new path and philosophy to embrace. Check it out at www.facebook.com/groups/mma4cmt . The files tab at the top contains my mission statement and more.
