Living on the frontlines

Well, I'm here. The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight. Hector met me at the airport. I enjoy riding to NIH with Hector the cab driver because he's such a great source of information about what's going on in HPSland. He gives me the down low on how NIH is going over with the crowd from Puerto Rico, whether there are any moral issues that might need attention etc. I arrived in time to actually order a real dinner. That almost never happens. Usually I get here after the last call for dinner and I get a very dry turkey sandwich that tastes something like cardboard. Dr. Markello was here when I arrived which is always a big treat. He really should have been a professor. I really do enjoy just picking his brain about what's going on with the research. Every time I learn something I didn't know befo...

The Tillmans do such a good job of putting together video - here's a video of the kids in child care playing in the park at conference! http://uk.youtube.com/watch?v=zL6avUVKUcI

This has been a long week in the health department. Since I boobooed my stoma, it has been acting up a bit. Tuesday I had to leave work. It just isn’t worth it to try to get naked in a public restroom thank you very much. But, it took me two hours to get a cab home, meanwhile the stoma is oozing and leaking and I’m trying to pack it with paper towels. Oh what fun. It continued to do that during the night, so I stayed home the next day. I worked – actually I worked 12 hours that day – but I also had two more leaks before things started behaving. If I had gone to work, I’d have wasted all that time in the middle of the day trying to get home. Still, I think work is losing patience with all my medical crap. And that’s okay. I’m losing patience with having to freelance again in order to afford to pay my basic bills. I have this sense that things are about to change. The other thing is that I’ve been so tired this week. But, it’s hard to argue to a doctor that this fatigue isn’t normal when...

I haven’t blogged in the last few days. A LOT has been going on. It was a hellish week at work and I’ve been trying to get ready to go to the NIH. I was very bummed that I didn’t get to blog about the Genetic Information Non Discrimination Act the day it actually passed the Senate. What an achievement! It’s been more than a decade in the making. We’re not 100 percent there yet, but it was a major milestone. The House version of the bill is slightly different than the Senate’s version, so they’ll have to have a committee to work out some of those details, and then it’s on to George W.’s desk. Even then, technically I doubt that will be the end. I was involved in the passing of Braille literacy legislation back in the 1990s. What I learned from observing that develop is that getting the actual needed law passed is only the first step. Once GINA passes we’ll have the tool we need. The next step will be to see how the government implements that tool. What regulations get written to impleme...

Congradulations and thank you to the Tillmans! Some of you that were at conference will remember that the Tillmans were asking a number of questions and taking some video. We intend to use some of the video they shot on the HPS Web site eventually - but while we were at it the Tillmans shot some video to be used in a contest being held by http://www.goodsearch.com/ . The contest was to create a video about the cause you goodsearch for - and the Tillmans took on the challenge! The HPS Network will get a $100 donation from Goodsearch and the Tillman video will be featured on their Website tomorrow, I think. And just in case you don't know - (how could that be since I shout it from the rooftops) if you search the Web at http://www.goodsearch.com/ and choose the HPS Network as your charity, we get a penny per search. Those pennies add up! So, keep goodsearching! And if you want to see the video (if you missed it the first time) here's the link: http://www.youtube.com/watch?v=2bohi...

Last night Univision ran the following story about albinism and HPS. It ran nationally. I don't speak Spanish so I can't give you a commentary - I'm just grateful for some coverage. Still, I am a bit disappointed that no contact information was given. When we did have an article run recently with a phone number to call at the end, we had eight new folks turn up. Imagine with national coverage how many we might have found. It's a shame. Hopefully there's someone out there that will google it. But, here's the link: http://video.google.com/videoplay?docid=-8317676877660950227&hl=en

Here's this morning's update from the Coalition for Genetic Fairness. Dear friends, We can hardly believe it, but GINA is at the brink of coming to the floor. It appears there is a deal, that the hold has been dropped and almost all systems are go. I say almost, because as of last night there were still a few sign-offs to be had to allow the bill to go to the floor under unanimous consent – the Senate’s preferred way of doing business.The Senate convenes at 5PM EDT today, and there is a strong possibility that GINA will go to the floor. If not today, then tomorrow – we can hardly believe it.Our allies in the Senate have thanked us, and it is to all of you we pass on that thanks – your calls and faxes had an astounding effect – we are breathless with the force of your passion. Thank you so much!Check and see if your senator has co-sponsored (below) – never hurts to jump on – so call to thank them, or call to ask them to cosponsor!We will blast the vote out to all of you as soon ...