What an Awesome Day!

It was such a bitter sweet long weekend...  This was Ed's weekend, This was the kick off to summer which he loved so much...  This was hangin' out with friends and fishing and sitting in the sun... This was everything that he was.  There were a lot of tears this weekend too.  But there was love and friendship and all the good things that summer in Cleveland brings!  No ribs, but I'll hit one of the burn-offs soon enough!  And it was HOT, too hot for me - Ed would have loved it!  It was never "too" hot for him...  he hated the cold more than anyone I've ever known...  even my re-located-to-the-South-cause-I-hate-winter cousins!  Speaking of which, our new family member should arrive this week....  Can't wait to hear the good news that baby-boy R has been deposited safely on earth in Charlotte, NC....  great excuse to go for an 8 hour drive!

So happy that I also finished my goodies for our PurpleStride 2012 Team Members...  I may need a team co-captain to help distribute said goodies to the team while I'm doing whatever it is necessary that morning to be ready for our big event!  Our Team hit the #59 mark and I could not be more thrilled (well, I could be - like, if we hit 80 and topped last years number, but I know that is not a realistic number this year - maybe 2013).   I cannot believe we are sooo close to the day!  Excited and nervous and anxious and excited, and did I say, excited!  One small issue, hoping it turns into a non-issue, we will see.  Can't predict the future now can we.  Everything will work out just like it is supposed too!  Because I have faith ...

The Kid is in the midst of the spring soccer tournament, and are these gal's playing some tough ball... I mean to tell you that yesterday that team played about as hard as you can for a 1-0 victory.  All very exciting...  They will play another game Thursday, and looks like they will be making the Championship game on Friday evening - she is so excited (it's really quite sweet to see these teenagers act like little kids sometimes).  She also has orientation on Thursday evening into her vocational program for her Jr. year...  we are very excited and nervous about this as well...  hope it goes fast so she can be at the soccer field before that game starts...  nothing like showing up to orientation in your soccer uniform & cleats.  Never a dull moment.

I worked my second farmers market (Tremont Farmers Market, Cleveland) yesterday to promote awareness and education for the Pancreatic Cancer Action Network and it went really well.  I figure by the time the last market rolls around in October, I will have it down to a science.  Two of my sweet friends stopped by to say "hello" and I love when that happens!  Ray was nice enough to snap a photo!  It was a great evening all around from market to soccer game!

Happy Summer everyone....  Nothing like being on the North Coast in summer time!  MK

PS - still haven't taken his cell number out of my phone, just can't hit that delete button, every time I try I hit cancel... soon though, soon.

Bad Day, just a Bad Day!

I had one of the worst days imaginable on Thursday;  Started with 2 data-bases at work - not "working" - so it made it really difficult for me to "work" .... Frustrating beyond belief.  But, first 9 hours of the day - done, time to move on to the the after work activities and should be smooth sailing............  never assume.

Earlier in the day I was excited because I received notification that Ed's cell will finally be disconnected.  However, T-Mobile cannot follow the simplest of instructions (yet again) to turn off Ed's phone / leave mine on and put the bill in my name....  I would appreciate comments regarding the difficulty of this...  If you all understand the following instructions, I'd appreciate you letting me know, cause it seems fairly simple to me?!...  I could not have spelled it out any more clearly - AND this was per T-Mobile's instructions I might add:

1) Turn Off Phone # (216) 555.5555 - person connected to phone deceased - see attached death certificate and obituary!
2) Put Bill in the name of ME
3) DO NOT mess with Phone # (440) 555.5555

(O.K., let's face it - I worded my fax a bit more professionally - but really it WAS that clear and simple)

Of Course, they turned off MY phone - and left Ed's on...  last time I dealt with T-Mobile, right after Ed passed, they gave his number a new 2 year plan - my dead fiance' had a new 2 year contract... I just wanted his phone "on" for at least 6 months so I could make sure all creditors & what-not could be directed to his estate attorney...  What a nightmare.  They did, however, manage to get the bill to my address so I could continue to pay it.....  funny how when it came to the money they were right on!

So, I leave work - can't call the Kid cause I realize half way home that MY phone is turned off - rush to pick her up to get her to a Doctors appointment at 5 p.m. - get to the Dr.'s office and practically throw her out of the car so I can speed off to the T-Mobile store in my community...  all so annoying...  Anyway, Happy ending (oh, that sounds dirty)!   WITH A HUGE Shout Out to the T-Mobile Store in Strongsville Ohio for working with your own customer service people, getting my phone turned back on and finally disconnecting Ed's phone...   It was bitter-sweet....  On one hand, it's another thing "done" - On the other hand - it's another thing "done".   So now I guess I have to take his number out of my phone - this makes me cry...  I don't know why - it just does.



Next, pick up Kid from Doctors office and have to zoom home to change for a soccer tourny game...  Then, the Kid says, my friend needs to eat some dinner - grrrrr  (because of course we had to have a witness to all this madness) - o.k., But - I have a conference call at 6:30 p.m. with California and my sweet new friend Sarah to discuss a Radio interview we are getting ready to tape for WDOK in about 10 days...  But, hey, I figure - I can let the Kid drive - she passed her class, has had her temps for 6 months - it's all good - She'll drive and I'll have my phone conference in the car - this should work, right!  Um, NO... after we pull into Sheets for a very healthy dinner for the Kid's friend - the Kid decides that it would be a GREAT idea to pull out into traffic - not cutting off 1 car - but crossing two lanes & cutting off 2 cars... needless to say the folks on my conference call received quite an ear full...  I got off the conference call immediately and was just happy to get to the fields!  Time to sit outside & watch some soccer & study my Pancreatic Cancer Action Network Facts - and it was beautiful outside!  The soccer game was WON - and the Kid won't be driving me again for a while...   Finally got home about 9 p.m. at night - and instead of dinner - I drank 3 beers. 

The End.  Happy, Safe Memorial Day Weekend - Hug a Vet - they make our life style possible!

4 weeks till PurpleStride

Well folks, it has been crazy in the Pancreatic Cancer Action Network world... Here in Cleveland we have so much going on this summer... Of course we have PurpleStride Cleveland coming up in less than 4 weeks... Ed's All Stars are rocking it! We have raised over $3,000 at this point, but I would be delirious if we hit the $5K mark again this year! No donation is too small... www.purplestride.org/cleveland ... Join us for this incredible day of hope and inspiration and give the next generation a cure!  Ed's All Star Dream Team would love your support! Just think - if 10 people who read this donate $10 - That $100 will make a difference!

Personally, I will be traveling to Washington, D.C. June 25 & 26 for Advocacy Day and support the Pancreatic Cancer Action Network while representing Ohio... Learn more here: http://www.pancan.org/section_get_involved/advocate/advocacy_day_2012/index.html

You can call your State representatives on Tuesday, June 26 from the comfort of your home and help change the future! It really doesn't get any easier than that.




We are also gearing up for Purple at Progressive, a day of awareness with the Cleveland Indians! Sunday, August 26 against the New York Yankees at 1:05. This will be another Cleveland milestone in the fight against Pancreatic Cancer. I am beyond excited to bring our fight to major league baseball!   Click on the link to see more details & order your tickets: http://www.pancan.org/section_get_involved/events_fundraising/event_details.php?id=2074

And lastly, on September 30, 2012 ... It will be our PurpleLight Vigil of Hope to honor all who battle, have won their battle and to honor those that have lost their battle to this Living, Breathing Monster. We are considering the Tremont Area in Cleveland at this time, which will make for a beautiful setting to remember our loved ones!

On a personal note, the Kid will make her Confirmation on Wed. and fulfill her promise to Ed to complete her sacraments.   Our church has traditionally confirmed in the 10th grade, which actually had been kind of nice - as these kids really are "young adults".  After this year, they will switch to 8th grade, which is more traditional - but I loved seeing all the Kids class mates from St. Mary's and it was nice for them to reconnect as they have all gone to so many different high schools.  She had an outstanding year in school and will officially be a Junior as of tomorrow!  Now she just needs to get a job to supplement that baby-sitting income!

Happy summer folks... I miss Ed every day and will fight the battle for him, which was what he asked of me... And I am glad to do it! MK

MetroHealth electrophysiologist Rosenbaum passes away

Another brilliant Cleveland Physician lost to Pancreatic Cancer.  When Steve Jobs and someone who studied at Harvard can't fight this disease, how can any of us really.

MetroHealth electrophysiologist Rosenbaum passes away


What is it truly going to take to wake up the government here in the US, and, the rest of the world. 

How many have to die in a single year to make it worth paying attention to.  I guarantee you if a President or his wife was diagnosed with PC - maybe then something would change?

40 Years With No Change ....

4 0   Y E A R S  ...  W I T H   ...  N O ... 

C H A N G E .... 

After losing someone I considered a friend this week (a 49 year old ANGEL, Wife and Mother), I am pretty raw emotionally...  this story just kind of set me off.

When brilliant minds with loads of cash can't win the battle what real hope does that leave the rest of us normal schmucks, seriously?! 

I think I'm going to file a law suite against the NCI for ignoring our disease...  I mean, is legal action all anyone understands anymore - I am so frustrated on this day, so frustrated.

So Please - won't you help us raise money to fund research and support the patients/families/caregivers fighting this nightmare of a disease?!  www.purplestrid.org/cleveland - pick a team - any team - I don't really care - just get involved or make a donation.

Next post will be happier, I promise!  Peace - MK

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

O M G..........   Less than 45 Days until We Turn Our Zoo Purple!  PurpleStride Cleveland 2012 - www.purplestride.org/cleveland - 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).

o

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 - www.purplestride.org/cleveland!

Peace & Good Health - MK

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

Moving Forward

This blog is a MUST read!  Michelle can sum-up words so beautifully and, I swear, she is sometimes picking my brain.


http://themerimeegirls.blogspot.com/2012/04/ugly-box.html

From a site I enjoy:  Giggle Palooza

"hate is a disease...symptoms are, jealousy, judgments, and resentments...please do not allow yourself to be contaminated...very contagious and spreads quickly!"

I will continue to try and remain positive, move forward...  It's really all anyone can do.  It isn't easy - and it certainly isn't "fair" - but not much in life is.  Oh, the month of May will be upon us shortly and the marathon of staying busy continues.... some days I am so thankful to be busy and some days I just want to stay in bed with the covers over my head.   But for the most part, as summed up nicely by Michelle in her post, I am tremendously glad that Ed is no longer in pain and can fish, play guitar and sit in sunshine all day long.  Tonight, we all know he is watching the Draft... and, as he would say, just LTD - Livin' The Dream. 

As Always - Ed's All Star Dream Team can use some good team-mates - won't you join us or consider making a small donation to this outstanding non-profit...   www.purplestride.org/cleveland

A friend pointed out a quote to me this week (which was used by someone in a means to shame me) and it made me curious as to who actually wrote the quote...  Turns out it showed up as Author Unknown, but I thought I would expound on it and add the rest of the quote.  Because regardless of which side of the battle you are on - it's a good quote.   And, I don't feel shame, because like the person who posted the quote, I feel that I am right and they are wrong?!  It is a lose-lose for sure.

Standing for what you believe in, regardless of the odds against you, and the pressure that tears at your resistance, ...means courage

Keeping a smile on your face, When inside you feel like dying, for the sake of supporting others,
...means strength

Stopping at nothing, and doing what's in your heart, you know is right, ...means determination

Doing more than is expected, to make anothers life a little more bearable, without uttering a single complaint, ...means compassion

Helping a friend in need, no matter the time or effort, to the best of your ability, ...means loyalty

Giving more than you have, and expecting nothing but nothing in return, ...means selflessness

Holding your head high, and being the best you know you can be when life seems to fall apart at your feet, facing each difficulty with the confidence that time will bring you better tomorrows, and never giving up, ...means confidence.

- Author Unknown

 

My Blog - My Opinions

Just to reiterate - this is MY blog - Ed endorsed it and encouraged me to keep it going.   I try not to comment about his life where it did not pertain to Me and My family (a few melt downs & rants about some bad behavior, sure - am I proud, no).  He had another life - he lived two separate lives - I was not part of his "7 days in his home town" - that would be "their" story.  Every other week he lived in another city - lived another life - was a parent & community member in that city...  I missed him on those weeks - but unless we had something special planned - I did not see him on those weeks;  When he was sick, I would see him on those weeks because it was me, or another one of his friends, that took him to treatment.  So, as for the new accusation about me "stealing" his time & taking him away - um, yeah, that's really not accurate.  When accusations are made, I will defend myself and my family.  I recently did take a slight step back and did post something negative, I have removed it and will try and refrain from that moving forward.  The bottom line - we need to fight this monster of a disease so that the next generation can have early detection, improved medication and increased survival rates... 

If You Do Not Like This Blog....   It's Easy....  Do Not Read It.

All Pictures posted here also belong to me - you have your own pictures and opinions, feel free to start your own blog which I will gladly not read.

Happy Anniversary EJD

EJD,

Happy Anniversary Weekend my sweet EJD... Six years ago we decided, that after 90 days of becoming great friends, we would move our relationship to the next level. The Mad Cactus has never seen so much PDA from two old-farts, I am sure of that... We started something spectacular, there are no words to describe it fully.... So many of us continue your battle, so many of us miss you very deeply, so many of us love you unconditionally... I pray daily that I will join you on the other side and that I find the strength to live life to its fullest until that time comes... Always, me xo

Opening Day And Shocker Tour '11

Ah, Opening Day for the Cleveland Indians...  

How happy would my sweet Edward James be today...  He had this awesome way of saying that Football was his favorite sport/season, that was, right up until Baseball season rolled around...  he really was equally happy about both.  He followed football much closer but he loved the weather that came with baseball season...  AND, He did love his Tribe! He loved sitting at a game having the sun beat down on him.  He was old school - no sunscreen, he'd say... "gotta get a good base burn going so I can tan better" ...  I would argue with him endlessly about sunscreen when he would go fishing in the morning out at the cottage.  I mean, even when he was terminal last spring/summer and we knew we were close to the end - I would still harp on him about sunscreen - he would just look at me, shake his head, laugh and walk away with his fishing pole & tackle box...  God I miss him... 

How many Tribe games did we see in our almost 6 years together - hmmm, I'd guess a little more than 15 ...  Not enough, that's for sure.  I will probably try and go to a few games this year because I just love the atmosphere at a game...  You bet I'll be at the Sunday, 8.26.2012 game against the NY Yankee's...  It's going to be an EPIC day at Progressive Field...  Stay Tuned for Details on THAT game!  Let's just say, you'll be seeing a "sea" of purple at the ballpark that afternoon!!!  

I think how Ed would have loved the winter of 2012...  Um, because there wasn't one!  I think of how he would have loved watching the Child play rec basketball this past winter and how he would be excited that her spring Soccer season was ready to start.  I think of how he'd be chompin' at the bit to get out to the cottage and get things ready for a summer of fishing and cocktails by the lake he loved so much...  He'd be all pumped up for a couple trips over to Put-In-Bay...  I think too, how much he would have loved to have been on the trip to Chicago I took two weeks ago for Community Outreach Leadership Training (COLT) for The Pancreatic Cancer Action Network ...  It was inspiring; And moving; And educational; And emotional - I think of how he would have loved being with the other Survivors (and Ed would have fit right in with a couple gent's who had me laughing every time I saw them...)   He would have loved it all...  Did I mention, I miss him.

Here's the thing I've been thinking about as we gear up for PurpleStride Cleveland 2012....  When Ed was sick, he made it abundantly clear that The Pancreatic Cancer Action Network, THIS Non-Profit Organization, needed support.  It was his mission to support them until he could not anymore....   Then he made me promise that I would continue his mission when he went away - um, duh - of course!  So, if you are one of the countless people who ever asked Ed, while he was here, "What can I do for You? Please ask"...  I am asking you on behalf of Ed, and all the Pancreatic Cancer victims and patients still fighting, please make a donation to our event - $5, $10 - every single penny will count in finding an early detection tool and a cure for Pancreatic Cancer - http://www.purplestride.org/cleveland !  We Are Ed's All Star Dream Team and we sure could use your support.

Here is my sweet Edward last April - almost exactly one year ago - doing what he loved most (well, almost) - Fishing and being with his friends... who were more than that - they were (and are) his brothers...  To The Boys of Key West and "The Shocker Tour 2011"!  Michael, Rob, Johnny, John, Greg, Greg and Elvis... Your unconditional Love and Support of Edward lives in my heart and you proved that blood doesn't make family - LOVE makes family!

As always,  Peace... MK   Go Tribe!

Michael - the picture above is just for you....  The ones below are for everyone else.

Oh, Sweetie - you can do better...

                                           Oh, Yes, Much better

Ed and his need to take self-portraits - Dear Lord Honey, really??  (Yes, you are ver handsome my love!)

                                                   Hello Monkey! 

Hanging on the balcony...

What is Key West without a trip to Sloppy Joe's...   Sloppy Joe's, Sloppy-Sloppy Joe's!




RIP my Sweet Edward James... Always on my mind, forever in my Heart.  xo

Pancreatic Cancer Action Network and AACR Award Research Grants Totaling More Than $3.4 Million

Pancreatic Cancer Action Network and AACR Award Research Grants Totaling More Than $3.4 Million

Pancreatic Cancer Action Network and AACR Award Research
Grants Totaling More Than $3.4 Million

CHICAGO — The Pancreatic Cancer Action Network and the American Association for Cancer Research awarded 14 grants to outstanding scientists throughout the country, supporting their innovative research in the field of pancreatic cancer.

This year’s total funding level of more than $3.4 million represents the largest annual disbursement since the Pancreatic Cancer Action Network introduced the program in 2003.

"Partnering with the Pancreatic Cancer Action Network is an incredibly satisfying experience. It has given us an opportunity to work with the spectacular professional staff there and has enabled us to help fund the most-promising, cutting-edge pancreatic cancer research to advance the field," said Margaret Foti, Ph.D., M.D. (h.c.), chief executive officer of the AACR. "These worthy projects have the potential to lead to major breakthroughs that will prevent, detect and treat pancreatic cancer, one of the most deadly of all cancers."

In its mission to advance pancreatic cancer research, the Pancreatic Cancer Action Network has collaborated with the AACR to promote and support outstanding research focused on conquering this dread disease. The goals of the grants program are to build a robust pancreatic cancer research community; to encourage collaboration, information-sharing and innovation; and to expedite scientific and medical breakthroughs for patient benefit.

"We are so impressed by the caliber of these 14 scientists and proud to fund their outstanding research projects. We are looking forward to engaging them with our organization and working together to help accelerate scientific breakthroughs," said Lynn Matrisian, Ph.D., vice president of scientific and medical affairs at the Pancreatic Cancer Action Network. "These grant recipients are joining a strong and dynamic collaborative community of researchers the organization has been developing since 2003 when we launched our grants program. Their findings will undoubtedly move us closer to the Pancreatic Cancer Action Network’s goal of doubling the survival rate of pancreatic cancer by 2020."

The recipients will be honored at a grants reception and dinner during the AACR Annual Meeting 2012, held here March 31 - April 4.

The Pancreatic Cancer Action Network-AACR Pathway to Leadership Grants are five-year grants totaling $600,000 each. These grants are designed to support the future leadership of pancreatic cancer research by funding outstanding early-career investigators beginning in their postdoctoral, mentored research positions and continuing through their successful transition to independence. The 2012 recipients are:

• Stephanie K. Dougan, Ph.D., Whitehead Institute for Biomedical Research
  "Transnuclear mice: Understanding the T cell response to pancreatic cancer"
  Supported by Celgene Corporation.
  
• Oliver G. McDonald, M.D., Ph.D., Johns Hopkins University
  "Genome-wide epigenetic reprogramming during evolution of pancreatic cancer"
  Supported by The Daniel and Janet Mordecai Foundation

The 2012 Pancreatic Cancer Action Network-AACR Innovative Grants are intended to promote the development and study of novel ideas and approaches in basic, translational, clinical or epidemiological research that have direct application and relevance to pancreatic cancer. These two-year grants provide $200,000 over the grant term. The 2012 recipients are:

• David A. Boothman, Ph.D., UT Southwestern Medical Center
  "NQO1-mediated ‘kiss of death’ targeted therapy for pancreatic cancer"
  Supported by the George & June Block Family Foundation
  
• Paul J. Chiao, Ph.D., University of Texas MD Anderson Cancer Center
  "TAK1 is a novel therapeutic target in pancreatic cancer" Supported in part by the Lefkofsky Family Foundation
  
• Channing J. Der, Ph.D., The University of North Carolina at Chapel Hill
  "Mechanism of ERK inhibition resistance and ERK-dependent pancreatic cancer"
  Supported by Tempur-Pedic Retailers
  
• Peter Espenshade, Ph.D., Johns Hopkins University School of Medicine
  "SREBP pathway as a target for pancreatic cancer therapy"
  Supported in memory of Bonnie L. Tobin
  
• Tyler Jacks, Ph.D., Massachusetts Institute of Technology
  "Mechanisms of K-RAS independent growth in pancreatic cancer"
  Supported by Blum-Kovler Foundation

The 2012 Pancreatic Cancer Action Network-AACR Career Development Awards are two-year grants of $200,000 that are designed to attract and support early-career scientists as they conduct pancreatic cancer research and establish successful career paths in the field. This year’s recipients are:

• Jiyoung Ahn, Ph.D., New York University School of Medicine
  "Oral microbiome and pancreatic cancer: A prospective case-control study"
  Supported by The Daniel and Janet Mordecai Foundation
  
• Darren R. Carpizo, M.D., Ph.D., University of Medicine & Dentistry of New Jersey-Robert Wood Johnson Medical School
  "Pre-clinical studies of a p53 mutant synthetic lethal compound in pancreatic cancer"
  Supported by The Daniel and Janet Mordecai Foundation
  
• Eric A. Collisson, M.D., University of California, San Francisco
  "Optimizing MEK inhibition in pancreatic cancer; from cytostatic to cidal"
  
• Mikala Egeblad, Ph.D., Cold Spring Harbor Laboratory
  "Dynamics of tumor-stroma interactions in pancreatic cancer"
  Supported by The Daniel and Janet Mordecai Foundation
  
• Kazuki N. Sugahara, M.D., Ph.D., Sanford-Burnham Medical Research Institute
  "Tissue-penetrating drug delivery to desmoplastic pancreatic tumors"
  Supported by The Daniel and Janet Mordecai Foundation
  
• David Sung-wen Yu, M.D., Ph.D., Emory University
  "Exploiting the replication stress response in pancreatic cancer"

The 2012 Pancreatic Cancer Action Network-AACR Fellowship is a one-year grant of $45,000 designed to support a postdoctoral investigator’s work in pancreatic cancer research. The 2012 recipient is:

• Florencia McAllister, M.D., Johns Hopkins University
  "Role of inflammatory cells in early pancreatic tumorigenesis"
  Supported in memory of Samuel Stroum

# # #

MEDIA CONTACTS:
Tara Yates
American Association for Cancer Research
(215) 446-7110
Tara.Yates@aacr.org
In Chicago, March 31 - April 4:
(312) 528-8206

Jennifer Reeves
Public Relations Manager
Pancreatic Cancer Action Network
Direct: 310-706-3362
Email: jreeves@pancan.org
In Chicago, March 31 - April 3:
(310) 460-8901

Press registration for the AACR Annual Meeting 2012 is free to qualified journalists and public information officers: http://www.aacr.org/PressRegistration.

About the AACR
Founded in 1907, the American Association for Cancer Research (AACR) is the world's first and largest professional organization dedicated to advancing cancer research and its mission to prevent and cure cancer. AACR's membership includes 34,000 laboratory, translational and clinical researchers; population scientists; other health care professionals; and cancer advocates residing in more than 90 countries. The AACR marshals the full spectrum of expertise of the cancer community to accelerate progress in the prevention, biology, diagnosis and treatment of cancer by annually convening more than 20 conferences and educational workshops, the largest of which is the AACR Annual Meeting with more than 18,000 attendees. In addition, the AACR publishes seven peer-reviewed scientific journals and a magazine for cancer survivors, patients and their caregivers. The AACR funds meritorious research directly as well as in cooperation with numerous cancer organizations. As the Scientific Partner of Stand Up To Cancer, the AACR provides expert peer review, grants administration and scientific oversight of individual and team science grants in cancer research that have the potential for patient benefit. The AACR actively communicates with legislators and policymakers about the value of cancer research and related biomedical science in saving lives from cancer.

For more information about the AACR, visit www.AACR.org.

Follow the AACR on Twitter: @aacr #aacr
Follow the AACR on Facebook: http://www.facebook.com/aacr.org

About the Pancreatic Cancer Action Network
The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to increase the survival rate for people diagnosed with this devastating disease through a bold initiative — The Vision of Progress: Double the Pancreatic Cancer Survival Rate by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival.

Click here to meet these grant recipients and learn more about their funded projects.

Follow the Pancreatic Cancer Action Network on Twitter: @pancan
Follow the Pancreatic Cancer Action Network on Facebook: www.facebook.com/jointhefight

Seeing Coach Ryan Speak Was Truly Inspiring

Coach Ryan spoke this past weekend at The Pancreatic Cancer Action Network's Community Outreach Leadership Training event in Chicago Illinois, which I was PRIVILIGED to be a part of!  Her presence is so dynamic and her hope is infectious....   Here is something from her that I found on another site today and I thought it was worth sharing!  (Hey Virginia - Be Proud - Be Loud!)

Ryan, survivor and former UVa coach, to speak on pancreatic cancer

"Debbie Ryan doesn’t know how she beat pancreatic cancer. Not many do. But now that she has, she’s hoping she can shed light on an atypically deadly disease.

Thursday, the Patients & Friends Steering Committee of the University of Virginia Cancer Center will host a presentation on pancreatic cancer. The lead speaker will be Ryan, the legendary former UVa women’s basketball coach.  “It’s not about beating the odds,” Ryan said. “It’s more about the fact that I was just lucky. I don’t know why I’m still here, and most of my doctors don’t know why. It’s just that it kind of disappeared.”  In most cases, that’s not what happens.

Pancreatic cancer is among the most deadly cancers, killing 94 percent of all patients in the first five years, according to Meredith Gunter of the Patients & Friends Research Fund, an all-volunteer organization dedicated to raising money for cancer research at the University of Virginia. Patients & Friends is hosting the presentation.

“Patients & Friends is offering this program to help inform the community about this disease and about the hope we can find in the work done at UVa,” Gunter wrote in an email.

Pancreatic cancer claimed 38,000 deaths in 2011, according to a statement from the Pancreatic Cancer Action Network. It’s the only “top ten” most common cancer with a five-year survival rate in the single digits, and that statistic is nearly the same as it was 40 years ago, according to the statement.  One of the big problems with raising money for pancreatic cancer is the shortage of survivors to “carry the flag,” Ryan said in a phone interview from Chicago, where she was also giving a talk on the subject.

The longtime coach of the UVa women’s basketball team and soon-to-be member of the Virginia Sports Hall of Fame is an 11-year survivor of the disease.  “I think it’s becoming more and more understood, but it is a disease that we are way behind on,” Ryan said. “Many patients are treated with 1950s drugs. I was treated with 1950s drugs.”  Ryan said she really believes in the cause and strongly supports the work of UVa professors Kim Kelly and Dr. Todd Bauer, who she said are “doing an amazing job at trying to eradicate this horrible disease.” Kelly and Bauer will also speak Thursday.

Short of eradication, she hopes it might be the sort of disease science learns to manage.

Ryan said the disease is of rising importance, because it hits the heavier more often, though it can also kill the thin.  The number of cases is expected to increase by 55 percent in the next 20 years, according to Gunter.  “We put so much money into prostate and breast cancer that we’ve made both of them manageable diseases in some cases,” she said.  Among the casualties to pancreatic cancer, she said, are Steve Jobs of Apple, actor Patrick Swayze, singer Luciano Pavarotti and actress Donna Reed.

The presentation, New Frontiers in Treatment, Detection, and Prevention: Changing the Pancreatic Cancer Paradigm, will take place Thursday at Alumni Hall.  Registration and continental breakfast will begin at 8 a.m. The program will run from 8:30 to 9:30 a.m.  Kelly will be presenting on molecular imagining scans as a form of early detection. She is a recipient of a research grant from the PCAN. Bauer will speak about personalized therapies.  The event is free and open to the public, but an RSVP is required. Call 924-8432 or rsvp.hsdo@virginia.edu to RSVP.  UVa Imaging is underwriting the event."

Pancreatic Cancer Advocacy Day 2012 Registrants

Pancreatic Cancer Advocacy Day 2012 Registrants

If you read this blog, you know what is most important to me right now!!!!   ADVOCACY...  

We, meaning the Advocates for Pancreatic Cancer Research & Funding, need more advocates to join our fight.  Don't let that person you love, who is fighting or has lost their battle with PC, be in vein....  HELP US FIGHT!  As another courageous man lost his battle this weekend, at the age of 34 no less, how can we not take the hill and fight for funding?!

Won't you come to Washington, DC with us to let the Government know that this disease needs more funding for research, for effective treatment options, for a CURE....   It's OUR TIME, It's OUR Turn.

It's time that PC becomes a priority to our Government - It's time that funding for this cancer gets a piece of the pie...  

Knowit.Fightit.Endit.org - We Need You! 

Happy Birthday MY Love

Today was about you and your precious life... You were in my head and heart all day and so many people sent their love... So many things running through my head and heart, just don't have the energy to put it in words right now... But soon. Happy Birthday MY love... Hope it was awesome where you are. Xoxoxo me

What is beautiful?

-----Original Message-----

From:   Marykaye Mackulin

Sent:    Wednesday, April 26, 2006 9:09 AM
To:       ED DEMYAN
Subject: Morning Fish

Just wanted to say Good morning handsome. Loved talking last night, and again, no prob getting up, hope the same for you.

xoxoxox mk :)

RE: Morning Fish

Wednesday, April 26, 2006;  9:16 AM

From:  "ED DEMYAN"

To:      "Marykaye Mackulin"

I just started typing your e-mail address and you beat me to the e-mail again. I love it! Good morning to you also. I had no problem getting up either and was smiling as soon as I awoke. Another beautiful day, beautiful thoughts because of beautiful woman.   Life is GREAT!  You rock my world. (cheesy huh?)  The Carpel Tunnel Suck Fish

This was Ed, he never worried about impressing anyone...   He had a gift of expressing himself so wonderfully and honestly.  He was nothing but pure Goodness from his soul...   His absence is felt every second, of every minute, of every hour, of every day...

xoxoxo Baby xoxoxo  me

3/6/2012 Adendum    Shared with me yesterday on Facebook from a friend after I stated how I want Ed to be proud of me if we are fortunate to be together on the otherside...  These are the statements that make me believe in what we had together and that it wasn't just my imagination:

On fb 3/5/2012 from Carole D:

Oh M.K.... please don't ever doubt that he was proud of you....listen to this quote from Ed to me Memorial Day 2011 during our conversation (this was in the garage after the "vasectomy" conversation :)......"just look at her would you, she's the reason, look at that smile it makes me smile, she's beautiful (big grin and a snicker), isn't she something, I love that woman".   Like Nanci said "real love" never dies neither will his words!!!

Chardon Ohio You Are In My Prayers

Dear Chardon Ohio and the Families Suffering From This Tragic Event,

You are all in my thoughts and prayers.  As the mother of a teenage daughter, I cannot even begin to imagine what you are going through.  I am sad that your future will now be filled with more grief than you will be able to seem to bear.  You will bear it, because it is what we do.  This is just so incredibly senseless.  My daughter is in a private learning facility now, partly because of bullying issues partly because of her learning disability - school size was to big to manage by faculty & staff and she was so incredibly sad....  She is so well adjusted now and pretty much loving her new program.  Bullying is an epidemic, not unlike the cancer that stole my beloved.  There was no way in hell I was going to watch my only child continue to decline because of her daily environment, it was more than I could handle during my grieving over Ed.  I am NOT saying that bullying was an issue in the Chardon situation, it just keeps coming up.  It sounds more to me like the young man doing the shooting had severe issues and no one headed the warning signs.  I am a single Mom, but I pay close attention to my daughters attitudes and try and help her the best I can.  Too bad this young man didn't have the guidance he needed.  Grandparent's are awesome, but they are older and less wise to the ways of the world in this modern-tech filled century, in my opinion (again, my opinion).  My chest just aches.

RIP you three young men taken entirely too soon.  And a speedy recovery, both physically and mentally, to the two students still recovering.

And to all the families involved... find prayer, find support and love your family. 

Peace MK

Please Join Our Team

REGISTRATION OPEN FOR PURPLESTRIDE 2012, CLEVELAND!

HERE IS THE LINK TO REGISTER FOR PurpleStride2012 ON 6/16/2012 AT THE CLEVELAND METROPARKS ZOO:

http://bit.ly/PSCLE12

We Are Once Again "Ed's All Star Dream Team"

Let's Make Him Proud and Fight This Monster Of A Disease!

 

 

30,015

Hit the 30,015 page views today! Thank you readers!

6 Months Now

So, the six month mark came and went on Friday 2/17/12...  The sting of missing Ed is still incredibly strong.  Valentines day brought back an awesome memory from VD 2011.  Last year Ed was in Brooklyn for VD week, no big deal, we didn't really celebrate that day.  But in 2011, I guess he felt like he needed to make a fairly grand gesture - maybe because we knew it would be his last - or just because he WAS Ed and had the incredible gift of making me feel special for no reason at all.  Man I miss him.  So anyway,  I was just coming downstairs to leave for work and I hear my house door open, I was like - Hmmm?!  Who is coming in my house at 8 a.m.?!  It was my darling man...  Although he was on disability by this time and had NO reason to get up early - he did.  He went to Malley's (you have to be from the CLE to understand this) and picked me up fresh chocolate covered strawberries and chocolate bacon bark with an awesome card of course.  I mean, come on man, how sweet is that.  Here is a guy on disability, with terminal cancer, in so much pain it cannot be described, but he gets up early, fights the VD crowd at Malley's, drives the 20 minutes to my house - all before I leave for work - so I could have a special day...  the level of Ed's UNselfishness is still astonishing to me.  I will never know another human who is/was so selfless as he was.  He truly did NOT have a selfish bone in his body - it was why it was so easy for people to take advantage of him - and they did.  It took him a long time to really identify who his true friend were and who would not take advantage of his great nature.  Again, it goes to why we didn't get married - he would have done it for me - but there was NO way in hell I was going to take advantage of that sweet nature and put all that pressure and stress on our already rough road.  Would I have loved to have married him - HELL YES...  But, as I stated before - it wasn't the most important thing.  Ed had already given me the most important piece of paper of his life - I was his Health Care Power of Attorney - He trusted me to make the decisions for his end of life - that is a great honor and shows trust on a level that some people will never know.  He knew I would absolutely honor his wishes - to let him die the way HE wanted - no feeding tubes, no vent, no prolonged suffering.  Does every part of your being want to do that stuff when you love someone to keep them alive, again, HELL YES...   Would I ever NOT honor his wishes - Not In This Or Any Other Lifetime.  He was DNR CC only, no heroic measures were to be taken to save his life at the end, it would have only prolonged his suffering - he fought hard - he was tired - it was time for him to go home.

I miss Ed so deeply and profoundly that words cannot describe it.  I loved him so deeply and profoundly, that words cannot describe it.  So for all you lovers out there - it's not about Valentines Day - it's about EVERY DAY.  And if you are not with your absolute Best Friend on your journey through life - don't waste anymore time - make a change.

Also - If you read this blog - you know that The Cleveland Pancreatic Cancer Action Network is gearing up for PurpleStride 2012 - Won't you Please Please consider joining Ed's All Star Dream Team or at least make a small donation to our team.  When it comes to Pancreatic Cancer - every SINGLE penny counts!  I'm not asking for big dollars, just a few would be greatly appreciated.  People being diagnosed with Pancreatic Cancer need to know that it is not automatically a death sentence and that HOPE is in their future.

Copy & Paste this link to register or donate:
http://www.kintera.org/faf/home/default.asp?ievent=1013361

or go to pancan.org and click on the "get involved" tab; go to "events & fundraising" look up the PurpleStride Signature Events - and find an upcoming PS in your community!  It's Easy - It's Important - It Could Save A Life!  We do not have the deep pockets like some other programs nor does the Gov't fund PC like some other cancers - we are grass roots - we need YOU!

Peace!  MK

REGISTRATION OPEN FOR PURPLESTRIDE 2012, CLEVELAND!

HERE IS THE LINK TO REGISTER FOR PurpleStride2012 ON 6/16/2012 AT THE CLEVELAND METROPARKS ZOO:

http://bit.ly/PSCLE12

We Are Once Again "Ed's All Star Dream Team"

Let's Make Him Proud and Fight This Monster Of A Disease!

PURPLESTRIDE 2012 - MARK YOUR CALENDAR NOW!!!

 

SATURDAY - JUNE 16, 2012

BE AT THE ZOO AND LET'S ALL CELEBRATE MY SWEET EDWARD JAMES... IT'S IMPORTANT AND YOU CAN HELP MAKE A DIFFERENCE!

THE CLEVELAND AFFILIATE OF THE PANCREATIC CANCER ACTION NETWORK ANNOUNCES PURPLESTRIDE CLEVELAND,

SATURDAY, JUNE 16^TH

AT THE CLEVELAND METROPARK ZOO

The Pancreatic Cancer Action Network, a national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure, announces PurpleStride Cleveland 2012. The 5K run/2 mile walk will promote awareness and raise funds for pancreatic cancer research and takes place on Saturday June 16, 2012 at the Cleveland Metropark Zoo.

This community event is planned entirely by local volunteers and everyone is welcome to participate.

Pancreatic cancer has the lowest survival rate among leading cancer killers and has claimed the lives of many public figures, including actor Patrick Swayze, former American Medical Association President Dr. Ron Davis, Carnegie Mellon University Professor Dr. Randy Pausch, actor Michael Landon, opera tenor Luciano Pavarotti, famed journalist Dith PranUpshaw and Clevelands own Casey Coleman to name just a few.

Jan. 31, 2006 E-mail Exchange

Here is an e-mail exchange between Ed and myself from exactly six years ago...   I was worried we were not going to have the money we needed for the deposit on the hall for our reunion, and I joked that I'd have to go out and hook for the money.  The following is regarding this issue...  when you read the last e-mail from Ed, I think on some level, that's when I KNEW he had the potential to be "The One" - that was exactly the sense of humor I needed coupled with being an adult...  Just the exact right mix of fun & work....  That was us.!

 

 

 -----Original Message-----From: Marykaye Mackulin > Sent: Tuesday, January 31, 2006 11:57 AM

To:  ED DEMYAN;
Subject:  Bad News,

Well, Here is our biggest problem, Brookridge wants a
deposit of $XXX when we sign the contract - If we
could get at least the committee members to pay
their fee right now, then we can cover the deposit (with
me putting in $ XXX up front - that's all I can afford
at this time). You guys have to let me know ASAP if
you can get me a check so I can re-contact Brookridge
and set up a date to sign the contract with the $$$!
I was going to do it this Sat., however,
I doubt I'll have $XXX by then.

 

Maybe I can go work the corner for the good of the cause!

Mary Kaye - Bearer of Bad News!

 

 From: ED DEMYAN  wrote:
I think you'll make more than $XXX as long as it's
not the Spudnuts corner. :) LOL Should I mail you a
check or are you going to be around the Brooklyn
area so I can get you the $55?

 

From: Marykaye Mackulin

Sent: Tuesday, January 31, 2006 1:01 PM
To: ED DEMYAN
Subject: RE: $$

Ed - We must have crossed e-mails, don't worry about
the $$$ till March 3 meeting, if you cannot make that
meeting we will catch up with the $$ the next time.

It's all good - No corners for me this year! MK :)

 

 

From: "ED DEMYAN" wrote: 

Sent: Tuesday, January 31, 2006 1:21 PM
To: "Marykaye Mackulin"

 

Glad to hear you're not working the corners. I know it's glamorous and all but it's hard work. :)
I will see you at the March 3rd meeting and pay up. Thanks, Ed

"I know it's glamorous and all but it's hard work"... OMG, How hilarious is that !!!  And, so we continued getting to know each other with every e-mail, every phone conversation and every little get together over the next 90 days until that infamous night at the Mad Cactus on 4/21/2006....   After this e-mail exchange, I saw him on February 3rd at the Parma Tavern to see the band The Dynasoars....   He wasn't supposed to be there - but he showed up anyway...   He walked me to my car that night and I distinctly remember being a little bit disappointed that he didn't try to kiss me...  That did not happen until the Mad Cactus night...  When he uttered his infamous pick-up line....   "I'm gonna get you drunk tonight"... in which I replied "You don't have to!"   And then he admitted he wanted to kiss me way back in Feb. at the Parma Tavern, but was afraid that I didn't "like him like that"...   Which is o.k., it all happened in it's own good time! 

Such romantics huh... yeah, not exactly the stuff of great poetry, but as honest and as sincere as it gets!  And as most of you know, from 4/21/2006 up until his last breath on 8/17/2011 we talked every single day, usually 4 times a day (or more)....   RIP Baby, missing you as these anniversary dates have arrived....  You are in my mind and heart always. xo