What am I supposed to do now?

I have a decision to make. My father received a questionnaire from the CJD Foundation we need to fill out about my mom. I knew this was going around to families a long time ago; I just forgot about it. So we have it now and we’ll fill out it but I’ll need to obtain my mom’s medical records for the harder questions. That’s the easy part, but…

I am not sure what to do about the blood testing and this is the decision I am faced with. A request from the American Red Cross came with the questionnaire. The Jerome H. Holland Laboratory for Biomedical Research in Rockville, Maryland would like the blood of CJD patients and their families (me) for research. I am all about research and doing anything I can to fight this disease from killing more people. I’m also well aware of how much CJD has infiltrated our blood supply. However, I am unsure about donating my blood to a lab where it will be tested by “designated staff at the Red Cross” and “other research groups.”

I have privacy concerns here. My test results will not be revealed to me and I have yet to go through genetic testing, if ever I will in my lifetime. However, I am uncomfortable with others knowing my test results and not telling me. I am really uncomfortable should that information get into the wrong hands. What if I am positive for the E200K genetic marker and that information gets out? Would I be denied health insurance? Life insurance? Last year, Former President Bush signed the anti-genetic discrimination bill but I still worry.

But I could do my part for science and for our blood supply. This 30 ml blood donation will be the only one I could ever make in my life, which is pretty sad when you think about it. I’ve never given blood and no blood bank in this world would want mine since my mother and uncle both died of CJD.

So do I donate my blood to science or keep my privacy a priority?

Hopes for 2009

Just wanted to make a quick list of things I hope to happen in 2009. Of course, if they happened at all in any year and I’m alive to see it, I’d be pretty happy!  

1. Tom Vilsack makes it mandatory to test every cow meant for human consumption for BSE once he becomes agriculture secretary. 
2. As always, better support for CJD families going through losing a loved one to this disease. 
3. I want to make it to this year’s CJD Convention in Washington D.C. to meet all of you, chat with the world’s top scientists, and have my day at Congress to represent Arizona.  
4. I’d like to speak at Barrow Neurological Institute again, or any hospital for that matter.  It’s always productive to meet with neurologists on the front lines. 
5. I just want to continue blogging and networking online with other CJD families as I keep moving forward to solutions to suffering and the ultimate cure that I know exists.