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





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.
 
 
 
 

Thursday, November 15, 2012

Thank You WOIO Akron for sharing!

http://akron.woio.com/news/health/84976-local-volunteers-take-action-during-national-pancreatic-cancer-awareness-month

Our Press Release being shared in Akron Ohio Today...  Now That Is What I Am Talking About.  Awareness at it's finest.  Boo Ya Ohio.  It Is Time To KNOW IT.... FIGHT IT.... AND .... END IT.

Peace All.

Wednesday, November 14, 2012

Happy Thanksgiving Everyone

These are words I can relate to each night when I go to bed.
Happy Thanksgiving in Heaven my Sweet Edward James.
Your Favorite of all the Holidays.
I miss you always and am fighting for the cause just like you made me promise.
Till We Meet Again - I keep you safe in my heart.
Thanksgiving Weekend - 2007 / Atlanta, Georgia

Monday, November 12, 2012

Purple - Let's make it the new pink and stop this cancer from climbing the death toll ladder.

Purple - the new pink

Click the link above and see why we need to start spreading awareness for other very deadly cancers.  There are several of them and we need to spread the awareness love. 

The money is there - it just needs to be shared a little bit more.  And, really, isn't that what we were raised to believe by our parents. 

For you EJD, and so many more, we battle for you, this November, Pancreatic Cancer Awareness Month!

Monday, November 5, 2012

Pancreatic Cancer Magazine Outreach now On Line!

Pancreatic Cancer Action Network flagship magazine, Outreach, is now online and interactive with in-depth articles focusing on our advocacy efforts that support research, patient services, awareness and getting the Recalcitrant Cancer Research bill passed before the end of the year! New page turning feature makes reading online easy. 

Click below to check it out!
publication: Outreach Fall 2012

Friday, November 2, 2012

November is Nat'l Pancreatic Cancer Awareness Month! Watch our impact video! http://www.pancanvision.org/watch-the-video

November is Nat'l Pancreatic Cancer Awareness Month! Watch our impact video! http://www.pancanvision.org/watch-the-video: Watch this video to learn about the Vision of Progress and how you can help—then share it with your friends and family.

By clicking on the link above, you will help create hope.


Thursday, November 1, 2012

Check out this great Fox Sports Ohio video - FOX Sports Girls - Pancreatic Cancer Action Network PSA

Watch This Great Video - Together We Can.... Know It. Fight It. End It.

Check out this great Fox Sports Ohio video - FOX Sports Girls - Pancreatic Cancer Action Network PSA

6% Survival Rate - 4th Leading Cause of Cancer Death in the U.S.

The Time for Change is Now.  Won't you support the Pancreatic Cancer Action Network.

Go to Pancan.org for more information and to see how you can help in your community.

Thank You Fox Sports & FSOHIO

Friday, October 26, 2012

Halloween 2006-2009

Halloween with Ed and Friends
from 2006 - 2009.  In 2010 he was
too sick from his treatments - he 
was bummed (as was I) because
we loved getting dressed up
for Halloween!

This Year - I will be the Mayor of
PanCAN City!
2007 
 
 2008
 
 

2009

Wednesday, October 24, 2012

The Vision of Progress 2020



I took the Pledge - Will You...   With Your Support we can change the future for the next generation...  Don't let your family, friends and loved ones be at risk for a 6% survival rate.  With your help in raising awareness - the future CAN and WILL be changed.

Friday, October 19, 2012

Senate should pass cancer bill NOW - Washington Times

Julie is a Rock Star C.E.O.  Maybe she should be a Senator!  It's time to Get'er Done!  Click on the link to see why....

Senate should pass cancer bill now - Washington Times



Monday, October 15, 2012

Beautiful Poem...


Borrowed from someone I admire very much. Thank you Gina for helping me even though what you are dealing with I can not imagine.  For Gino and Ed.... Forever in our hearts and always on our minds.

To Honor You
By Connie Kiefer Boyd

...To honor you, I get up everyday and take a breath.
and start another day without you in it.
To honor you, I laugh and love with those who knew your smile and
the way your eyes twinkled with mischief and secret knowledge.
To honor you, I take the time to appreciate everyone I love.
I know now there is no guarantee of days or hours spent in their
presence.
To honor you, I listen to music you would have liked, and sing at
the top of my lungs ,with the windows rolled down.
To honor you, I take chances, say what I feel, hold nothing back,
risk making a fool of myself, dance every dance.
You were my light, my heart, my gift of love, from the highest
source.
So everyday, I vow to make a difference, share a smile, live,
laugh, and love.
Now I live for us both, so all I do, I do to honor you.

Friday, October 12, 2012

Man Walks Across America to Raise PC Awareness & Funds for Research



Well - BJ is absolutely someone that goes right onto the HERO list for this gal!  Did I support him with a small donation, You bet your Butt I Did!

Lustgarten Foundation gives 100% of the money they raise to Research for Pancreatic Cancer. Although their organization is not in any way connected to the Pancreatic Cancer Action Network - the organizations do have a nice working relationship and support the same goal - Research to Find An Early Detection Tool for Pancreatic Cancer and ultimately a Cure!

I wish BJ the Best of Luck on this very cool adventure and can only hope that some day I could do something on this scale to raise awareness & funds for research.

BJ - Man, if you make it through the CLE, you have a bed, a roof and a meal on me - and of course, a GLBC beer of your choice!

God Speed My PC Warrior Friend!

Thursday, October 4, 2012

Beautiful Night to Shine Purple for 2nd Annual PurpleLight National Vigil for Hope

On Sunday, September 30, 2012 Cleveland was one of 60 communities in the US to take part in the Pancreatic Cancer Action Network's 2nd Annual
PurpleLight National Vigil for Hope.
 
This Vigil shines a purple spot light on this disease and the need to make it a priority in the cancer fighting world.
 
It was a beautiful night! 
All of our speakers did a great job and the media was
on-hand to help support awareness, which was greatly appreciated!
 
We all know that for the next month, there is only 1 color and 1 cancer that will be focused on....  and that's o.k. to a certain extent - we just have to keep in mind that there are other, very deadly cancers out there that steal our Mothers, Daughters, Sisters, Wives, Aunts, and Cousins that need attention!
 
As for me - Purple is the color I will fight for until we have "respectable" statistics.... 







Thursday, September 20, 2012

House Approves Cancer Bill

House Approves Cancer Bill

As I sat watching C-Span last night (Wed. 9/19/2012) I couldn't believe that I was watching the House unanimously pass a Bill that I, along with thousands of other folks that volunteer for The Pancreatic Cancer Action Network, have worked so hard to get passed.  For Our incredible staff in Washington and California alike, what an amazing accomplishment.  And in some very small way, I helped - because Ed asked me too.  I don't know if I'll ever make the trip back to D.C. for Advocacy Day, it was hard, really hard.  But who knows, this feeling of accomplishment is overwhelming and all I did was tell our story - his story. 

Now, as soon as possibly TODAY, the Senate side will vote....  if we can get the Affirmative on the Senate side it will head to the Presidents Desk.........   This is what Ed wanted to see.... this is what he wanted to do - ADVOCATE.  He never got the chance to make it to Washington, D.C., but I did.  I brought his fight to the Hill, it was by far the most difficult thing I have ever done.  Reliving his battle was painful to say the least... but it had to be done.  The future has to change for people diagnosed with these "recalcitrant" cancers...  So they changed the name of the bill, Who Gives A Gobidy-Goo...  Call it the "we-had-to-think-of-the-hardest-word-to-say" Cancer Research Act of 2012 (in other words, the Recalcitrant Cancer Research Act of 2012) and just get the dang thing passed.

I cried a lot watching this happen last night - It was more emotional than I could have ever imagined - It's C-Span for gosh-sakes - C-Span.........  Rep. Ann Eshoo rocked the microphone like a star.  It was a brilliant thing to behold.  If I would have missed it live, I would have been crushed.  I also DVR'd it.  Think anyone would be interested in coming over to my house for a "House Passes a Bill on C-Span" Party - - - - *** crickets ***   Oh, well ...  Guess I'll have to enjoy that one on the couch alone.

So - Here's to the Senate doing the right thing and passing S.362, The Recalcitrant Cancer Research Act of 2012!  And here's to the guy that lives in that big ol' white house signing it into Law.

Oh, EJD, this, this was your highest goal during your volunteer days with this group - we did it!  

Hopefully, the change will come now and the next generation will not have to hear.... "Sorry, your terminal, there is no hope.  Go get your things in order and say good-bye."