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Showing posts from February, 2010

Pledge

This is good. It would serve us well if all school children (and a lot of adults) would see and hear this every day. http://www.youtube.com/watch?v=wdwc_3RjhQs Enjoy and share.

Rare Disease Day 2010

Rare Disease Day 2010 is coming up - February 28th, 2010. Contact any and all government officials and legislators you can, as well as any other people you know. There are over 25 million persons with a Rare Disease - one that affects less than 200,000 people. In most cases this is too small a population to support research or treatment development. However, with over 100 diseases in this classification there are a LOT of individuals and families dealing with these maladies. You can go to http://www.rarediseases.org/ for more information. Your thoughts and support are needed and welcomed.

New Blog

I just set up a NEW blog - http://www.livingwithasnowman.blogspot.com/ . This will be a blog chronicling my wife's disease and my thoughts and comments on it. I will take the content from this blog that relates to MSA to that blog. This blog will remain as for my insane ramblings and political and social commentary. Please check out the new blog - http://www.livingwithasnowman.blogspot.com/ . Comments are welcomed.

Travel notes

I am travelling again, this time by car. I came up with some random thoughts during the long ride today. I have been making the trip down I-95 since the early to mid-70s. (if I was being fair there was the illicit trip in my father's car when I was 16, but I digress) In fact, the first six or seven years we made the trip you had to leave I-95 at many points because it did not exist yet! (anyone else remember the old, decrepit, bridge in Savannah, Ga?) I found myself doing it again today. This trip was a bit different because I did it alone. I am not sure I have made the trip alone before. If so, it has been very rare. With six kids and a wife, there was usually a few or more other travellers. Even when I was going down for business as I was this time, and have a few times in recent years, I usually had my wife with me to combine a visit with family in Florida. This trip was done alone. Nine hours in a car alone can give you a lot of "thought time". So, here are some of th