Hmmm, I do not completely trust the National Data MS Registry Act. Lisa E. of Brass and Ivory goes into details about the National Data MS Registry Act. Is this the beginning of our government keeping track of individuals based on the disease they live with? I do not see the relevance of keeping surveillance on people living with MS will bring about a possible cure. I do know because of ones medical record that is compiled as a credit report can prevent you from getting life insurance. It happened to me when I sought to buy another policy. Had I not had life insurance already I would not have any today and that is why I advice any young person to seek outside life insurance from your job because you never know what life will throw at you.
Now, researchers need brain tissue and spinal fluid from MS’ers because it has the potential to tell us more about MS. Are you willing to leave brain tissue for research? I asked myself that since I read about researchers needing brain tissue from my local MS Chapter September newsletter. After pondering if, I want to donate a piece of my brain for research. I decided I would leave a little piece of my brain tissue and some spinal fluid for science. I want to do this for my daughters, their children, and other family members. Furthermore, I would be gone and why not help scientist understand MS and help further their research in finding a cure for MS.
MS could be genetic and if leaving a piece of my brain and some spinal fluid can possibly help scientist learn more about MS and hopefully one day find a cure from the research than I am all for it. I do not wish living with MS on anyone. It is bad enough dealing with RRMS and not knowing the day when MS go into the SPMS.
5 comments:
I definitely agree with you about the Health 'Credit Report' as being very detrimental.
It seems that if this Act becomes official, they will start with joining efforts of NARCOMS and the Accelerated Cure projects. Try to do something like these on a larger scale.
I can see how a better estimate of the actual number of MS patients there are, the more able federal funds can be requested and awarded for research and services (I hope).
Check out this post which addresses this issue further.
what Lisa said. I am registered with every registry I can think of as every little bit of information will help with the bigger picture. Simple statistics of numbers of people with MS and where they are could mean more MS centres. There are also fewer African-North Americans with MS than Caucasians and statistics show different progressions of MS between those two populations. We need to learn why. It's hard to do when you don't know how many are out there.
s.
Good food for thought. Thanks for bringing this to our attention.
I will give none of my brain away. I have done many reseach projects, I'll give info, but I have "donated" enough of my brain to MS already. My whole dead body is going to the local university, but for now---nope.
They can have whatever they want from my rotten body, including my brain and spinal fluids. I agree -- if nothing else for the children in my life and the possibility of them getting MS too. Too bad I couldn't donate myself now...
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