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.

Saturday, January 12, 2013

Time to Get Back Into the Swing of It!!!

I can't believe it has been over a year since I have posted.  There were multiple reasons I was unable to post, but once they got fixed there were the excuses.  I have followed some of my fellow bloggers in their awareness for Alzheimer's, but have been very busy with life itself and haven't been able to keep up as much as I would like.

Over the past year two of my cousins and my aunt have passed away from Early On-Set Alzheimer's, many are still struggling, and many are still participating in the research and are raising awareness.  I am so proud of them all.

I was interviewed by an author about a book she is writing about Alzheimer's, and she has spent a lot of time with family members and talked with most of us about our own experiences with the disease.  I can't wait to see the finished product. ( I will post details at a later time)

My sister and I are planning on participating in the research in Pittsburgh that the DeMoe family has been doing for many years now.  We are planning to go in March of this year.  We are still working out the details of this, but have decided we should go together and help with this great study.  That stirs up a roller coaster of emotions, but it has to be done for our future and the futures of the DeMoe family members.
I am very hopeful for the study because there are so many new discoveries and drugs they have found that weren't available when my dad was battling this disease.

I have found many groups that are helping others with Familial Early On-set that I would like to recognize, but will make a dedicated post for them.  I am so grateful for the people that recognize how rare this disease is and how much support they give.

I will post again soon.  I just wanted to let you all know I am back on board.  It is hard to find the time these days to get away to concentrate and write but I will.

Thank you to all that have checked in and kept me going and encouraged me to continue on my journey.