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

Wednesday, August 13, 2014

Community Outreach Leadership Training - aka #COLT2014

The Pancreatic Cancer Action Network presents
COLT 2014 in Los Angeles, California!

So, it was COLT time again 2014 ... Exciting, stressful, fun, emotional, draining ... you name it, we experience it in 2.5 days while battling jet lag from flying to California. But, hey, when you get a chance to spend time with your purple family from around the country, you jump at it, however exhausting it proves to be!

Thus, the Cleveland, Ohio Affiliate Core Roles of the Pancreatic Cancer Action Network spent this past weekend in Los Angeles with our @pancan (follow them on twitter) family. We had intense training, met and spoke with researchers, had a few cocktails, shared tears and, of course, laughter. (Learn more at

The end of our weekend is highlighted with a dinner and awards ceremony followed by drinks & dancing! I was especially excited for this year as I was nominated as Media Representative for 2014. May not seem like a big deal to some, but to me it meant a huge deal. Why, well, that Ed continues to be honored, that we still fight for all who have been diagnosed and are battling, for those lost we keep your voice alive, and that by 2020 we will double the survival rate! No more 6% - No More!

I am honored and proud to say, I was indeed named the 2014 Pancreatic Cancer Action Network Media Representative of the year. I am humbled and share this with the entire Cleveland Affiliate who work tirelessly for NE Ohio to ensure the future of this disease will be changed! Together we will move forward, grow our PurpleStride to match those "big markets", continue to have our PurpleLight National Vigil of Hope to remember and honor our purple warriors and together, we will #WageHope!

Here is a sneak peek at our weekend - please take a few minutes to see how #Cleveland represented our city proud in Los Angeles by clicking this link - enjoy:

Sunday, May 4, 2014

Cleveland Connection: Pancreatic Cancer Action Network “Purple Stride” Walk « CBS Cleveland

Listen to Cleveland's Dave Ramos talk to me about Pancreatic Cancer, what the Pancreatic Cancer Action Network is about, and our upcoming PurpleStride Cleveland happening on June 21!  Also hear our incredible survivor Gail tell her story of Hope and progress!

Cleveland Connection: Pancreatic Cancer Action Network “Purple Stride” Walk « CBS Cleveland

Monday, April 21, 2014

To fight Pancreatic Cancer - PurpleStride Cleveland 2014 - Timed #5K, Fun Walk, Entertainment, Fun!

We are about 60 short days away from PurpleStride Cleveland 2014!  In the battle against Pancreatic Cancer, this is a day of hope, supporting the fighters and remembering our lost warriors!  It is inspirational.  It is about a community of people who know what the person standing next to them has been through and is going through.  Saturday, June 21, 2014 - Voinovich Park / Won't you join us or make a donation and help change the future of this Monster disease!

Take a moment and listen to our incredible survivor, Ken McManus, talk with Jim McIntyre about his battle and being a 5 year survivor, by clicking the link below.  The importance of #PurpleStride and how you can help make a difference in this battle.

Friday, March 14, 2014

Selfie-Centered | The NonProfit Times - Runner Up is Pretty Cool!

Selfie-Centered | The NonProfit Times

What a cool little contest to be a part of....  And, being runner up is not too shabby at all!  Thrilled with the timing of the article being published - as Ed would have turned 51 tomorrow (Mr. Ides of March)!  So - Happy Birthday Baby... working hard to raise awareness and fight the fight for all the PC warriors out there.

How the man who interviewed me came up with the abbreviation "PCAN" is beyond me.... because I always say the entire name of the organization, it is ingrained in my soul to never abbreviate it.  But almost everyone who is not directly connected to the organization, abbreviates it. 

Here is the my runner up picture!

So - if anybody out there in cyber-space is feeling generous this St. Patty's Day weekend, and you want to throw some philanthropic dollars our way....   click on the link & make a donation, or better yet, join our team... 
We Want You to help in the fight!
Learn more at
#PancreaticCancer #PancreaticCancerAwareness #Cleveland #PurpleStride #PurpleStrideCleveland #5KforCharityCleveland #FunWalkCharityCleveland #VoinovichPark #NorthCoastHarbor

Wednesday, February 5, 2014

PurpleStride Cleveland 2014 - Ed's All Stars Want YOU!

Feeling a little blue.... North East Ohio Weather gotcha down.... Want to feel all warm and fuzzy inside?  Then Register today for #PurpleStride Cleveland and join Ed's All Star Team.

This event is truly inspirational - it's a day of hope and joy, mixed with a few tears.  A little short on change right now, no worries, register for FREE as a volunteer... We need our volunteers - they make the event the successful walk/run that it is!   We would love a team filled to the brim with volunteers.  and I promise you - you will know you did something awesome that day and feel good when you go home!

So mark those calendars and get on board!
(Right behind the Rock and Roll Hall of Fame
You won't be able to miss us, look for the purple)

Tuesday, January 28, 2014

Non-Profit Times Selfie Contest ... And The Winner Is.... Not Me!

Here is the copy of the announcement!  Although I didn't "win" - it was such fun and raised awareness!  And truly, that is what the goal always is.  To get the word out that this outstanding organization exists and is here to help anyone through the battle that is Pancreatic Cancer.  #2 - Works for me, hell, even if I came in 5th I'd be pleased, and because it is award season, I say.... It was an honor just being nominated!  And that is no exageration.

The votes have been counted (and recounted) and we are now ready to announce the winner of the first NPT Selfie Contest. The winner, with 30.76 percent of the vote, is…
Kimberly Johnson, of the Cystic Fibrosis Foundation!
Jillian Goodwin January 1, 2014
Kimberly’s photo of a Cystic Fibrosis patient clearly resonated with out audience and she will be the winner of a $100 AmEx Gift Card. Mary Kaye Mackulin of the Pancreatic Cancer Action Network came in second place with 26.71 percent of the vote. Though there can only be one grand prize winner, all five of our finalists will be featured in an article in the March 1 issue of The NonProfit Times.
The full results can be viewed below:
Pancreatic Cancer Action Network
Everybody Eats
Education Connection
Heifer International
Cystic Fibrosis Foundaiton
We at The NonProfit Times would like to thank everyone who participated in the NPT Selfie Contest this year. It was a lot of fun and we hope that we can revisit it again in the near future.

Thursday, January 23, 2014

#NPT-Selfie Finalist - How Flippin' Cool is this!

Well - It's been a long time since I've posted on this blog!  Life is crazy busy and although I remain committed to the battle that is Pancreatic Cancer, the desire to write has not been very strong lately.  

I am not the kind of gal who "wins" much - the only "luck" I have is what I earn through hard work and dedication.  If I go to a casino, I might as well just wad up my money and toss it in a trash can, cause the odds of me winning anything by gambling are about non-existent.  I did, however, throw my picture into a contest to raise awareness for the Pancreatic Cancer Action Network - and low and behold - made the top 5!  And, it's not even some amazing picture - just a cool pic of me in Washington, D.C. in June 2013 participating in Advocacy Days & PurpleStride DC!

Here is the link to the site:

Voting closes tomorrow (January 24, 2014) so I know that I won't get a butt-load of extra votes because I posted on this blog - but rather - just wanted to share this cool thing that happened.  It just goes to show ya, that with a little persistence, raising awareness can come in the strangest ways.

I continue to miss Ed daily - I don't cry too often because I don't have the every day sadness of watching him suffer.  I have random outbursts, however, at the strangest times.  Usually in the car driving because of a song that pops up on the radio.  He will always be a part of me and I cherish it deeply. 

And Don't Forget.............    PurpleStride Cleveland is right around the corner and we sure could use some great team members - and volunteers!  If you register as a volunteer, It's FREE!  And, you still have a ton of fun - believe me.  So mark Saturday, 6/21/2014 on your calendar and join us at Voinovich Park for a Great Day on a Great Lake!  This year marks our 13th consecutive PurpleStride and we'd love to see it be the BEST ever!  Just click here to join Ed's Team: