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, June 26, 2013

Pancreatic Cancer remains one of the Deadliest Cancers - The Post Newspapers : Opinion

Shout out to The Post for publishing our LTE....  just found out today!  Happy Flippin' 50th BD to me!  I celebrate this week for myself and for my Ed who didn't get a chance to make this milestone BD.  I wear this number as a badge of honor - getting older is a privilege that too many Pancreatic Cancer victims do not get a chance to experience!  So Rock On CLE style folks!

Pancreatic cancer remains one of the deadliest cancers - The Post Newspapers : Opinion

The 7th Annual Pancreatic Cancer Advocacy Day was a HUGE success.....  It is certainly not my cup of tea - doing the political side of this battle - but I was honored as the State Leader for Ohio and I took this opportunity and made the absolute most of it.  Congrat's to the Pancreatic Cancer Action Network for organizing another GREAT year on the Hill.  600+ Strong to make our voices heard and to let the Gov't know - We Are Not Going Away anytime soon. 










Tuesday, June 4, 2013

PurpleStride Cleveland 2013 - A Great Day on a Great Lake

Well, to say PurpleStride Cleveland on June 1st was a huge success would be an understatement.  The new venue was fabulous, the weather held out, our emcee - Joe Pagonakis was his usual, incredible self and our Champion of Hope, Cleveland Browns own John Greco was as gracious as he is tall.  His Fiance' Jodi was also so warm and supportive.  It was truly a Great Day on a Great Lake and my heart was filled with joy! 

Photos-Glenn at The Purple Stride 5k Event « Q104 Cleveland

I am especially proud of Ed's All Star Dream Team 2013 - We rocked our fundraising and were the #3 Team - for me personally - hitting the goal of the #3 individual fund raiser was an extremely proud moment.  The weather held out for us and I got to enjoy an afternoon of love and friendship when it was over.  Am I burned out - you bet.  But I need to re-energize as I get ready to head to Capital Hill for our Advocacy Days to ensure congress does NOT reduce health care funding due to sequestration.


We also have our incredible Purple at Progressive night coming up on Sat. July 13th against Kansas City....  That is going to be a blast as well.  If you have never paraded the bases at the Prog - it's too much fun!  Going down the tunnel and seeing the ball field from a different perspective is very cool.

You know you want to join us - it's pretty easy to have a great summer night while supporting this very worthy cause - click here:  http://oss.ticketmaster.com/html/group_corp_start.htmI?l=EN&team=indians&owner=9750315&group=68918&err&event&customerID

So - although I don't blog nearly as much as I should - my commitment to keeping Ed's mission alive and moving forward is still part of my daily life.  I don't see that changing anytime soon!

Much Love to you all (if anyone is still even reading) ........  MK





Sunday, May 19, 2013

The 11th Hour on AM 1420 The Answer: PurpleStride Cleveland: Fighting for funding for P...

The 11th Hour on AM 1420 The Answer: PurpleStride Cleveland: Fighting for funding for P...: Ken McManus, MaryeKaye Mackulin, and Jim McIntyre Ken McManus is a living miracle.  He is living with pancreatic cancer, almost four y...

Sunday, May 12, 2013

Pancreatic Cancer: Purple Stride 2013 « CBS Cleveland

Check out our awesome Media Support for the Cleveland PurpleStride 2013 coming up June 1st down at Voinovich Park!

Q104's Katherine Boyd interviewed myself and our awesome Survivor, Jessica!
http://cleveland.cbslocal.com/2013/05/10/pancreatic-cancer-purple-stride-2013/

And Leon Bibb interviewed the both of us for his Sunday morning Show, Kaleidoscope 
http://www.newsnet5.com/dpp/about_us/this-week-on-kaleidoscope---may-5-2013

Both were awesome opportunities to raise awareness in Cleveland and to let folks know we are out there every day batteling this disease! 

For Ed!  


Monday, May 6, 2013

COLT 2013 - A Big Success for the Cleveland Affiliate of the Pancreatic Cancer Action Network

Had the outstanding opportunity again in 2013 to attend "COLT" - Community Outreach Leadership Training for the Pancreatic Cancer Action Network.  The Cleveland Leadership team learned some great new ways to improve our Affiliate - and we played as well.  Here is a great little video of our 3 packed days in Manhattan Beach!  Along with some of my personal photo's from the trip. 

http://animoto.com/play/WoApIz6vp9aK1ZKChfTRLw











Tuesday, April 30, 2013

The Post Newspaper Publishes Us Again - We Appreciate The Support

When the local news organizations step up and help us with our mission to raise awareness, and in turn, help us reach our fundraising goals.........  all we can really say is THANK YOU!

I will tell you - getting published never gets old........

http://www.thepostnewspapers.com/strongsville/opinion/article_6cece611-cc63-5abe-af07-54ff6b1debd0.html#user-comment-area

PLEASE JOIN US ON JUNE 1 TO FIGHT THIS MONSTER DISEASE....  I promise you will have fun....  And, I have not given up hope that Captain America will pop in and say Hi...  I mean - he will be in the CLE causing us all kinds of traffic headaches, it's the least he could do - no?!

Come on Summer.....


Thursday, January 31, 2013

PurpleStride 2013 - June 1 - Voinovich Park

ED'S ALL STAR DREAM TEAM
WANTS YOU.......  
 
PurpleStride Cleveland will be here in the blink of an eye, won't you join our team, create your own or just make a small donation to support the Pancreatic Cancer Action Network and help change the future of this disease!
 
Please join us for
 
PurpleStride Cleveland 2013
 at our new location in Voinovich Park on
Saturday, June 1, 2013!
 
Enjoy music, food, kids' activities, our ShopPurple store and awards, all while raising awareness of pancreatic cancer.

Choose...
a timed race, run for fun, or enjoy the family-friendly walk. Form a team to raise funds, volunteer and honor a loved one.

Registration opens at 7am and opening ceremonies begin at 8:30am. The 5K run and 1 1/2 mile walk takes off at 9am and closing ceremonies will wrap it all up at 10am.

Online registration will close on May 28th so please register at
 
 
 
 
We Are Going to Rock the North Coast
CLE Style!
Ed's All Star Dream Team 2013
 
 

Friday, January 11, 2013

Lisa Nieme-Swayze Is a Purple Godess - She Keeps Patricks Fight Alive - I can Relate to That!

http://www.mercurynews.com/opinion/ci_22351071/lisa-niemi-swayze-pancreatic-cancer-finally-gets-federal

Lisa Nieme Swayze is internationally known, when she lost Patrick to Pancreatic Cancer, she could have mourned in private and no one would have blamed her.  She could have quietly gone on with her life without speaking about PC ever again.  Instead, she is a hero to many of us.  She keeps Patrick's voice alive in this battle, as I try to do for Ed's voice.  She fights beside us and for us in the public arena, because she can.  She is a super-star for this purple community - We Thank Her.

SHE IS A CHAMPION OF HOPE! 

Thursday, January 3, 2013

President Obama Signs the Recalcitrant Cancer Research Act into Law

Pancreatic Cancer Action Network Praises President Obama for Signing the Recalcitrant Cancer Research Act into Law

AND HAPPY 2013 FOLKS.....  



This is why I will continue to volunteer and spread awareness.  So change will come.  I made a promise to Ed to not ignore this disease - to keep his voice alive - to make sure the next generation doesn't have to hear what we heard from the doctors. 

HOPE is on the horizon now.  We will change the future - We will fight together - We will ignore those folks who refuse to believe that we can make a difference. 

It is time to  KNOW IT.  FIGHT IT.  END IT.

The petty personal attacks will not stop me - the hate will not stop me - the negativity will not stop me - from carrying Ed's mission forward.