Wednesday, June 19, 2013

DIAN here we come!!

I know.  I know.   I keep saying I’m going to find the time to post.  I am a very busy girl. ;)
Here is a quick update…
So my sister and I didn't go to Pittsburgh like we had planned.  Many circumstances came up and it was just not going to work.  Instead, we will be going to St. Louis and take part in the DIAN study there.  We are leaving this Sunday and will test for three days.  It is such a privilege to be able to do this, yet a little scary too. 
Several of my cousins have done this study and I am very proud of them for doing so.  There are a bunch of us DeMoes and even though we live so far away we are still doing this together. 

For those of you that aren’t familiar with the DIAN study I would like to tell you what we are about to do.  DIAN stands for Dominant Inherited Alzheimer Network.  It is an international research partnership of centers, which study a rare form of Alzheimer’s disease that is caused by a gene mutation.  We are doing this study for doctors and scientists to better understand the genetically mutated form of Alzheimer’s, which will lead to better tests and treatments.  There is no cure, but they have come so far just in the last 10 years with treatments and medication it is now possible to slow down the progression of the disease and hopefully with continued research and development, may eventually even stop it altogether.  Because my dad had this mutated gene, my sister and I both have a 50% chance of carrying the gene.  This study will collect data and tissue from us so researchers can determine what changes occur before and after Alzheimer’s disease symptoms start.
On Monday we will take a psychometric test then an MRI.  Tuesday we will have a lumbar puncture done then injected with an imaging tracer for the PET scan.  I know I will not be able to, but I think it would be so cool to be able to see what they will see in my brain.  I love that kind of stuff.   Then on Wednesday we will do another PET scan with a different type of tracer.  Once we are finished with that we will be coming home.   

Oh, one last thought.  If anybody knows of any good restaurants or fun stuff to do in the St. Louis area, feel free to share them with me.

1 comment:

  1. You guys are doing an awesome thing! The more people can do to help figure this horrible disease out the better it will be for future families, and for the scientists, to have an end put to it. Do they pay for your time there? Most people are compensated for medical studies.