Dearest Eric & Friends,
It means more than words can express that you are doing this and in my name.
I agree these things take time but it is a very worthy goal. ALS is a horrible
disease but since only 15 people are diagnosed with it daily (as opposed to hundreds)
it is a forgotten disease. For every dollar given for ALS research, $400 is spent on
the "problem" of male baldness - this is the sad priority list we are dealing with.
Well, forgive me for getting on my soap box but when I went to my support group in Syracuse
they all agreed that losing one's ability to communicate is so devastating
since your mind is normal (or should I say as it was before - hee hee). I want
to personally thank everyone who is helping this hope of communicating better to become a
reality someday for those with ALS.
Well, it started with Carol. Everybody loves Carol. Really.
Many actresses have achieved far greater celebrity, but I don't know anyone
who is more universally loved by the people who actually know them. Carol has
touched a lot of lives through her work in the theater and continues to be a
model of optimism as she deals with a terminal illness.
Carol first noticed that something was wrong when she
started slurring words in the late spring of 2004. By late summer, her speech
and walking had slowed considerably. In the fall, she started using a walker and
by winter she was essentially wheelchair bound and had to use a whiteboard to
communicate. The speed at which the illness struck stunned us all.
About this time, our adventure racing team was starting to
get some national recognition. We decided that we might use this exposure to
help raise awareness of ALS and possibly do some fund raising. Carol's Team
In January of 2005, Carol and I went to the speech clinic
at Ithaca College to look at communication aids. None of the devices offered a
significant improvement over the erasable whiteboard she was using. I suddenly
realized the opportunity that lay ahead of me. In the space of a few hours, my
life had been given a new purpose.
That's not to say I was living a hollow existence up to
that point. I love my wife and daughter, enjoy racing with my friends, and
generally try to leave the world a better place than I find it. But this was
different. It seemed like my whole life, my teenage tinkering in electronics,
Computer Science undergrad, grad work in Statistics, development work on
synthetic voice air traffic control, and current job as a project manager, was
all converging to solve this problem. I couldn't write it off as a
coincidence; I had to act.
Carol's Team became a software company. We still race,
partly because that exposure gives us our only source of funding but mostly
because Carol would be aghast if an organization bearing her name didn't take
time to have fun. We are a non-profit organization, but since we don't have
any profits and don't expect any in the future, that distinction is only
important to the IRS.
It's a shoestring operation for the moment, and likely to
remain so for the foreseeable future. But most of the software that actually
helps people � email, web browsers, spreadsheets, etc. � was originally
developed by individuals or tiny organizations with little or no funding.
Corporate development seems to be much more focused on things like missile
guidance systems and tax accounting packages.
The question of what to do with the software once it's
written is still largely open. Some would argue that software is never done;
versions merely being snapshots taken at times when the program appears to be
behaving itself. We may market it and use the income to fund further research
and development. We may turn the project over to a bona-fide software company.
We may simply release it into public domain. Much will depend on how quickly a
working model can be built. We would hate to slow down its introduction simply
because we don't have the resources to finish the job.
We like to think of ourselves as being located on the Web
since that's pretty much how we interact (except when we're racing � but
that can be anywhere). We are still physical entities (if we weren't, we
wouldn't need to cure ALS) and most our members live in or around St. Louis,
Missouri or Ithaca, New York. If you'd like to meet some of us in person,
check out our activities calendar.
Anyone can join Carol's Team. You can be
involved a little or a lot. We only ask that if you say you're going to do
something, you follow through as we don't have any surplus managers hanging
around checking up on folks.