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





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!  www.purplestride.org/cleveland

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.

http://am1420theanswer.blogspot.com/2014/04/purple-stride-cleveland-to-benefit-pcan.html?spref=fb




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 www.pancan.org
 
 
#PancreaticCancer #PancreaticCancerAwareness #Cleveland #PurpleStride #PurpleStrideCleveland #5KforCharityCleveland #FunWalkCharityCleveland #VoinovichPark #NorthCoastHarbor
 

Wednesday, February 5, 2014

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

http://purplestride.kintera.org/cleveland/edsallstars

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!
 
SATURDAY - JUNE 21, 2014 - VOINOVICH PARK AT NORTH COAST HARBOR
(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. 

http://www.thenonprofittimes.com/news-articles/and-the-winner-is/

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…
Drumroll
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
26.71%
Everybody Eats
7.43%
Education Connection
13.69%
Heifer International
21.41%
Cystic Fibrosis Foundaiton
30.76%
Total1,037
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: 

http://www.thenonprofittimes.com/news-articles/introducing-the-nonprofit-selfie-finalists/#.UtlMnc3D3L8.twitter

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:  http://purplestride.kintera.org/faf/search/searchTeamPart.asp?ievent=1093767&lis=1&kntae1093767=7A43DA8855714CC1875C3C4949C19853&team=5790211

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

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. 

Friday, December 28, 2012

The Recalcitrant Cancer Research Act, Formerly known as the Pancreatic Cancer Research & Education Act, Passes Congress - 19 Action News|Cleveland, OH|News, Weather, Sports

The Recalcitrant Cancer Research Act, Formerly known as the Pancreatic Cancer Research & Education Act, Passes Congress - 19 Action News|Cleveland, OH|News, Weather, Sports

Giant Shout Out to 19 Action News in Cleveland for publishing the Press Release from our National Headquarters.

When the local media steps up to help raise awareness it thrills me to no end.

You Go 19 Action News - Honest, Fair, Everywhere!  Ha.  Couldn't Resist.

Happy, Healthy New Year to you all. 

Peace - MK

Friday, December 21, 2012

The Recalcitrant Cancer Research Act will no doubt soon be Law.

http://www.pancan.org/email/corp/bill_passes_congress_dec2012_constituents.html

Best Holiday News Ever!  I am golden for Christmas with this news.  The only thing left to wish for is a cure.

Cleveland PurpleStride 2013


HARD TO BELIEVE - BUT WE ARE ONLY 5 MONTHS AWAY FROM CLEVELAND'S
PurpleStride 2013.....
 
Saturday - June 01, 2013
Voinavich Park (behind Rock Hall)
Timed 5 K Run / 1.5 Mile Family Fun Walk

I love creating our Team Page and I get so excited whenever a new team member joins or a donation is made.  This is MY personal Christmas.  As the Holiday's have lost quite a bit of their magic for me, for now anyway, I truly look forward to our PurpleStride day.

This is the day that means so much to me.  This is a day that Ed loved near the end of his battle and journey on this planet.  This is a cause he made me promise to continue to support....   So - Come Join Ed's All Star Dream Team 2013 and let's help change the future of this Monster Disease!

It's Easy - It's Quick - And there is NO such thing as too small of a donation - Every Single Dollar helps and ad's up to make a difference.

This year is very different and will be a very quiet Holiday - so until Paige gets married and has babies of her own to brighten the holiday's with children's laughter - PurpleStride will be my personal holiday.

Wishing All of you a very Happy Holiday Season no matter what you celebrate.






Friday, December 14, 2012

Miley The Wonder Puppy

Well,  Teenagers do some pretty dumb things - their brains work different than adults.  I mean, we can all remember some of the really idiotic things we did back in the day, right.  So, one week ago my darling child decides to rescue a puppy - without my consent mind you.  I was adamant that we would not get another dog and that no dog was welcome in our house.  Within 24 hours of Miss Miley being in our house, you can imagine how fast my mind (and heart) were changed.

Against all common sense, and the reminder by my family that this is insane, I think I am going to keep this little girl.

I mean, common, look at that face!  She will be Miley the PanCAN Wonder Pup and you bet she will be sporting lots of Purple!

Wishing You all the Happiest of Holidays, regardless of what you Celebrate....  As my Sweet Ed and I used to say....... Happy Chrismahannakwanzavis.






Wednesday, December 5, 2012

Recalcitrant Cancer Research Act is Pushing Forward!

Update on the Bill:

Yesterday, December 4, 2012, the United States Senate passed the Defense Authorization Act, which includes the Recalcitrant Cancer Research Act of 2012 (crazy - yes - but that's politics for ya) It’s not law YET – we have a few more steps to go – but the finish line is clearly in sight!

Click here to learn more: http://www.pancan.org/section_get_involved/advocate/congressional_update.php

This is outstanding news to everyone who has ever been touched by Pancreatic Cancer! 

Our voices will only get stronger and Awareness will continue to grow.  The future of this disease MUST change - and I will continue to be a part of that change as much as possible.  You can help too!  Don't continue to ignore a disease that may touch your life! 

Visit www.pancan.org to see how you can get involved!




Thursday, November 29, 2012

Big News from the Senate!

http://www.pancan.org/section_get_involved/advocate/congressional_update.php

CONGRESSIONAL UPDATE
November 29, 2012
Current Co-Sponsor Count for the
Pancreatic Cancer Research & Education Act:

in the U.S. House of Representatives (HR 733)
Passed on September 19, 2012
Click HERE for detailed information

in the U.S. Senate (S. 362)

59
(including our lead sponsor,
Sen. Sheldon Whitehouse) 


Click HERE for the full co-sponsor list to see if YOUR member has joined us!
THE RECALCITRANT CANCER RESEARCH ACT(FORMERLY KNOWN AS THE PANCREATIC CANCER RESEARCH & EDUCATION ACT) IS NOW OFFICIALLY PART OF THE DEFENSE AUTHORIZATION ACT!
As you may already know, on September 19, the U.S. House of Representatives unanimously passed the Recalcitrant Cancer Research Act, formerly known as the Pancreatic Cancer Research & Education Act (H.R. 733). Earlier today, the Senate approved the legislation to be added to theDefense Authorization Act. At this point, the Senate is expected to pass the Defense bill in the coming days.

Since the Recalcitrant Cancer Research Act was not in the House’s version of the Defense bill which was passed in May, delegates from the House and Senate will meet next week to iron out differences between the two bills. However, at this point, we do not have any reason to expect that there will be a problem getting this legislation included in the final Defense bill.

After the House and Senate agree on a compromise version of the Defense bill, the final bill will be sent to the President to sign.

Updates regarding the legislation will be sent out as it progresses through the process.


Appropriations Update
The "lame duck" session has officially started on November 13, and it will be a very busy couple of weeks as Congress focuses on finalizing the FY13 federal budget in order to avoid sequestration – which would mean automatic across-the-board cuts, which would be devastating to research funded by the National Institutes of Health (NIH).

By law, the $110 billion sequestration cuts will be split between defense and domestic programs. Of the domestic programs, an estimated $39 billion in cuts will be applied to “discretionary” programs, which include the NIH. With the remaining $16 billion in cuts coming from programs like Medicare. By Congressional Budget Office estimates, most programs will face a 7.8% budget cut per year. A cut like of this nature to the NIH budget will amount to over $2.4 billion in this fiscal year alone. Specifically, cancer research funding will receive a 8.2% cut over the next ten years.
While focusing on avoiding sequestration, Congress failed to agree on the federal budget before the start of the new fiscal year on October 1. Instead, a continuing resolution (CR) was passed on September 22 to allow the day to day operations of the federal government through March 2, 2013.
The CR essentially allows federal programs to continuing operating until Congress returns and decides how much money to allot to a wide range of federal activities, including cancer research. The CR, in this instance, will permit a small, 0.612 percent increase, to all federal programs. But while even a small increase in spending may be unusual in these austere budget times, it is important to note that funding for the National Cancer Institute will not even keep pace with the research inflation index.
“Some changes to current law are needed to prevent catastrophic, irreversible or detrimental changes to government programs or to ensure good government and program oversight,” the House Appropriations Committee said in its summary of the legislation.
Overall, the CR will fund the government at an annual rate of $1.047 trillion, the amount lawmakers agreed to last year as part of a deal to raise the government’s debt limit. That would be an $8 billion increase over current levels, according to the nonpartisan Congressional Budget Office.
It is important to note, however, that the new Congress that is sworn in next January will be charged with finalizing funding levels for federal spending through the remainder of the fiscal year. It is at this time that Congress will decide cancer research funding levels
The Pancreatic Cancer Action Network will be monitoring this issue very closely over the next several weeks.


Have Twitter? Follow us for the latest breaking advocacy news!

Tuesday, November 20, 2012

TempurPedic Hugs Back Campaign still going on!

If you have not already taken your
Rest Test
please plan to do it soon!!
$10 per validated rest test at a participating Tempur-Pedic retailer is donated
 
Find a retailer near you www.tempurpedichugsback.com 
THANK YOU Tempur-Pedic!!
 
Truly does not get any easier than this!
Lay down for 7 minutes.
Fill out a verification card.
Done.
We get $10 from Tempur-Pedic.
Campaign is going on through end of November!
 
So this Black Friday,
take a break in style & comfort, and do something good.
 
On that note - Happy Thanksgiving All.