Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Friday, May 4, 2012

45 Days to PurpleStride Cleveland - THEN... D.C.

O M G..........   Less than 45 Days until We Turn Our Zoo Purple!  PurpleStride Cleveland 2012 - - I am so excited to celebrate the love of my life and honor all who are/have battled this monster of a disease, their families & caregivers!

And then, after PurpleStride, I am off to Washington, D.C. to make Ed's voice heard on the hill along with over 500 average citizens fighting to make a difference! 

Back in November of 2010, when we were hopeful, before Ed's surgery was canceled, this was one of the things he desperately wanted to do - make it to D.C. for Advocacy Day - it wasn't to be....... But you bet your lilly-white behind - He Will Be Heard!

I know, I know - You all want me to shut up about it already.......  NOT gonna happen!   I will push & push & push until the Government and the NCI recognize the need to step up the fight against this horrific disease.  In 53 days I will be in Washington, D.C. to encourage our countries leaders to pass the Pancreatic Cancer Research and Education Act...  Here it is in a nutshell:

Pancreatic Cancer Research and Education Act

(S. 362 / H.R. 733).
This legislation would require the National Cancer Institute (NCI) to develop a long-term and comprehensive strategic plan for pancreatic cancer research which would help us reach our goal of doubling survival rates by 2020.

Things need to change - Things need to change NOW.  Just this week there were two horrific stories in the news, one about a Kindergarten student in Southern Illinois facing Stage IV pancreatic cancer, and another, about a young girl - 17 yrs. old - losing her battle with Pancreatic Cancer...   In one week these two stories broke...  This disease needs major attention - this disease really does need AWARENESS.  It IS the silent killer and we need the government and the medical community to step up and pay attention!

I have never been more proud to be a part of any organization (well, maybe when I had my first job at Memphis Kiddie Park when I was 15?!) ....  The Pancreatic Cancer Action Network is going to make the difference - we will be the voice of change - Know It... Fight It... End It...   Ya know what, I have a big ol' mouth and a big ol' attitude and I intend to use it.

Edward is missed so much that there are not enough words to describe it.  But I refuse to let this gentle, giving, caring soul be forgotten...  He was the most incredible man and I had the honor and privilege to know and love him deeply.  Yesterday I had to right a small paragraph about his journey and battle with this disease - it brought back so many emotions - most especially upsetting was thinking about the night we received the news that his surgery was canceled - It made me cry a lot yesterday.  But not today - today it's about PurpleStride and getting ready for Washington.

Edward James, you live in so many of our hearts and I promised you I'd fight - and I am...  Now, if we could just get your damn team to double digits, I would feel like we accomplished your goal for PS2012!   So, out there in cyber-space... consider joining our team or making a small donation...  Ed's All Star Dream Team -!

Peace & Good Health - MK

What a Handsome Man.....  RIP Baby - Hope you are enjoying that Rock 'N Roll Heaven!  Me xoxo

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