Sunday, January 27, 2013

Set date

The dates are set!  My sister and I along with my mom and husband will be in Pittsburgh the first of April.
We will be doing the DIAN study.  I have posted about DIAN in an earlier post last year sometime.  We are a little nervous about the whole thing, but also happy we get to do our part in the research for EOAD.
I can't wait to post about that when we get back.

While we are there we will get to meet Niki Kapsambelis, the author that is writing a book about our family.  It is called "The Good Fight".  While my Aunt and some cousins were in Pittsburgh a couple of years ago she met them and was so inspired by the rareness of the disease and how positive our family is while dealing with it, that she wanted to write about us all.  How wonderful! She has met many of my cousins already.  I talked to her early last year and she has recently spoken with my mom about our own experiences.
It is in the publishing stages, I believe.  I can't wait for the finished product.

1 comment:

  1. I wish it was in the publishing stages! Actually, I am still writing and reporting. But I am planning to turn the manuscript in to my editor at Simon & Schuster later this year.

    I am really looking forward to meeting all of you in April.