It has been a couple of years years since I posted in this blog. When I started the blog, I had a high hopes of posting regularly about my own struggle with this rare genetic condition. I still hope to use this blog to make more people aware of the condition, that so many aren't even aware of. Hopefully, posting more often, dependent on my full-time work hours.
It is unfortunate that the media doesn't give more notice to this condition that affects 1 in 3000 people. Further, it is unfortunate that retailers don't raise funds for this disorder, like they do for other worthy causes like MDA and the National Cancer Foundation. Perhaps one day that will change.
I have sent emails and tweets to the local media here in Topeka, hoping that they will do at least one story if not a series of stories during National Neurofibromatosis Month or on World Neurofibromatosis Day (May 17). In addition I have sent tweets to the Today Show and NBC News for the same reasons. Hopefully, they will each be receptive.
I have sent emails and tweets to the local media here in Topeka, hoping that they will do at least one story if not a series of stories during National Neurofibromatosis Month or on World Neurofibromatosis Day (May 17). In addition I have sent tweets to the Today Show and NBC News for the same reasons. Hopefully, they will each be receptive.
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