I attended the conference in February 2008 for the first time. My son was diagnosed in May of 2007, so the diagnosis was still new to us. I certainly never imagined myself lobbying Congress prior to this.
If you haven't participated in an activity like this before, I urge you to do so. For myself, I consider this an opportunity to fight back against this disease. The front line of the war against DMD is in research. The research doesn't happen without dollars. The federal government is a major funder of medical research. Thus, the need to interact with our elected officials. It's time well spent.
Don't be intimidated by the thought of going to Congress. You will be trained, and you will have support from professionals and experienced parent advocates. Don't think your voice isn't important. It is - constituents matter.
Last year was important. We got the MD-CARE act reauthorized. I think this year is even more important. January 20 is the end of an
error, sorry, era. I'm personally very hopeful that we'll see an end to flat NIH budgets with the shift in power in Washington. This is an opportunity. We need to seize it.
Count me in for this year. I'm looking forward to it. Hope to see many of you there...
Go to the link Brian provided. The details are there. There is an orientation from 3pm to 7pm. That is great you are going. Will you be traveling with family again this year?
Happy New Year!