Topic: 16,726 yard run

As many of you know, the football player Walter Payton died of cc. His family started a foundation in his memory and there is a run/walk to raise money every year in September. This year the event will be held on Saturday, September 12, 2009, see:

http://www.payton34.org/

I am going to plan on being there, probably with some family members.

Patty

Re: 16,726 yard run

I was looking at Paytons link and although I think it is great that his fund is doing so much to help cancer research, I was disappointed to see that none of the donations were going directly to Cholangiocarcinoma research.

The  Lord is my shephard

Re: 16,726 yard run

Barbara...I am disappointed as well about the very same reasons you are mentioning.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 16,726 yard run

Yeah, ditto me in. I wrote a letter to the Peyton Foundation a month ago and never heard back. I am convinced that we need to open a door. What that will be has not popped in to my mind yet. I feel there are enough marathons,  golf tournaments auctions, raffles. It has to be something that will make everyone sit up and take notice. I am thinking, I am thinking. Something so out of the ordinary. Like, a 3 day CC cruise to "nowhere" with a big title. Its like on the tip of my brain but maybe thats the part of my brain thats sleeping!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 16,726 yard run

I didn't realize this...  I see that he was treated by Dr. Greg Gores of the Mayo Clinic, the same doc that told us that chemo was the only real option for my Dad's cc.  Per an earlier article, Payton summed it up quite welll....

""Am I scared? Hell yeah, I'm scared. Wouldn't you be scared?" he asked. "But it's not in my hands anymore. It's in God's hands."

source: http://ad.go.com/nfl/news/1999/1031/144491.html

Lainy, perhaps you might have luckier luck going through his son Jarrett Payton. It looks like he's still making public appearances, with a music/speaking career rather than football, & was just married this month. The family's website indicates he enjoys speaking at schools in and around Illinois on the importance of education- what a great speaker/advocate he'd make for a cc affiliated symposium.

(http://www.payton34.com/jarrett.asp)

-Tess

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That's a great idea Tess. The thing would be to figure out where and when we could use him. I came an inch closer by figuring out, I think, that we could use a huge corporation of some kind to help get us out the door. Either that or one of the biggest celebrities on earth. Bottom line is we need to be adopted!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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I think the reason the Payton website does not mention cc is that, outside of our community, nobody knows what we are talking about. When I told people what type of cancer my mother had, pretty much everyone said they never heard of such a thing. I remember the media reported Payton had liver cancer, I think it is just easier for them than trying to explain what the heck a bile duct is and most people know that liver cancer is a bad diagnosis to get. I think Lainy's Oprah campaign would help, we'll see if we get any attention there.

I did notice before that the money does not go directly to cc research, not sure why but I will contact them to ask. Perhaps it is that because of the small number of patients there is not as much research proposed? If we can get a large group for the walk, maybe we can attract some publicity of our own. I guess I wanted to do this because Payton was also such a respected man, he and his wife had started a foundation for kids and it just seems he was trying to use his fame for others, not himself. Also, this year it is 10 years since he died, perhaps Oprah would do a show for that reason if his family would appear. Payton's wife was on the Oprah radio show, the family focuses a lot on organ donation:

http://www.oprah.com/article/oprahradio … z_20061024

Patty

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Ladies, I think we are on to something! Lainy, you are thinking corporation behind us or celebrity status, I think Walter Payton, via his son Jarrett is a great idea.  Lets face it, Walter Payton was/is  loved by so many.  I know I am a bit biased since I am from Chicago and remember vividly the Superbowl shuffle season when the Bears won the Superbowl, but their are Payton fans even in Italy.  Like Patty said, Walter was such a philantropic and respected person.  Maybe, we stress to Jarrett the importance of research money for CC due to the rarity, case in point, his own father was misdiagnosed because the cancer is so rare.  Look what Michael J Fox has done for Parkinson disease.
BTW, awesome meeting you today Patty!  Thanks for making the effort, it meant a lot to me.
xoxo
Barbara

The  Lord is my shephard

Re: 16,726 yard run

On Oprah's website you can suggest topics for shows, they only let you type in 2000 characters so it is hard to get your message across but I wrote and suggested a show on cc. I mentioned that they could tie it in with Walter Patyon. We'll see what happens.

Patty

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Thanks Patty, I already did that a month ago. No response. No response from Barbara Walters either, Bonnie Hunt. That is why I was thinking of taking a different direction. I am also thinking that perhaps with us all going off in different directions it may damage efforts made by those more qualified. That is why I was trying to think of another way to attack this. I know I like things done yesterday and with this CC its so very hard to wait while it does it's damage but we really need to think this through. So glad you and Barbara got to meet. Now you both know how good it felt to meet Marion.  Perhaps if we took our thoughts in a different direction and concentrated first on a "meeting" situation we could then proceed to the higher level. Just not sure what to do.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Yes, Lainy, Barbara told me she would be at an event for her business yesterday and I was going to stay home and clean and organize the house but going to a Maple Syrup Festival with my niece in gorgeous weather to meet a newfound friend was just what I needed. Barbara sells all kinds of stuff that is hard to resist. I am a biscotti nut and as I sit here typing I have my coffee and my Biscotti di Barbara and let me tell you folks, it's pretty darn good!

Patty

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I'm thinking of those people who bike across America or walk across America to raise awareness & money for one cause or another.

Do we know anyone in shape? smile

Re: 16,726 yard run

Lisa, I was right with you until you asked if anyone was in shape? I always say I am in good shape for the shape I am in!!!!  I wrote Barbara, Patty and Tess (they had written to me) that I am taking a breather on this opening the door thing. I would have to represent myself only and IF I got someone who would listen where would I go from there? I aways want things done yesterday and I guess I felt CC can't wait. If anyone has any ideas feel free to jump in with some advice.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 16,726 yard run

How about RV'ing across America?  Driving across America?  The reason that those things are successful is that they stop by every podunk town and talk to the local newspaper.

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Maybe if we can get everyone on this site to go to Oprah's website and all submit a show idea for the topic of Cholangiocarcinoma, they will get the point. I just submitted one. It;s really easy and only takes a couple minutes.

"Love is like the wind, you can't see it but you can feel it"

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Hi Angela. Last October I collected 35 letters from Care givers and patients. I submitted them 2 times, with return receipts. Never heard a word. I then e mailed the show as you say along with e mails to Bonnie Hunt and Barbara Walters. Nothing. Oh and a letter to the Walter Payton family. It's just not that easy and gets very frustrating. But go for it and see what happens. Any fund raising or representation must be on our own. You cannot represent the CC Foundation. We have also talked about a mini convention where we might all have a chance to meet. That could draw some publicity. Other than that we need to come up with a really big attention getter.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 16,726 yard run

When the Olympic torch makes its way to the olympics, it is done as a relay. I doubt many people who come here regularly have the resources for a months-long event, but if the section for each individual involved only took a day, many of us could. Might be an organizational nightmare and we would need quite a symbol to carry as well as a great destination. If each participant were a patient or a primary caregiver honoring one specific patient, a log or diary of the event with signatures/stories from all, maybe including news reports from the towns visited, could be an ongoing marketing piece. Maybe even 3 simultaneous legs, converging on St. Louis, one from Maine, one from Florida, and one from California? Or could the destination be a famous cancer center?
I would love to be involved with such an event, but I do not want to take the lead in it.

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Has anyone done one of those maps where flags represent sites visited or store locations or cholangiocarcinoma patients located? Could the webmaster put up a map and ask us all to flag our locations?

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You want something big....Perhaps someone from the foundation could contact the Chicago Bears. November 1 is the 10 year anniversary of Walter Payton's death AND the Bears play a home game that day. It would be wonderful for there to be a small article on cholangiocarcinoma and the foundation in that games program. Perhaps there could be collection boxes at consession stands and at the entrance. Perhaps the organization would LOVE to make a tax deductible contribution that matched the donations. Maybe the foundation could have a booth at the game. Maybe the team could donate signed items to sell or auction. I know it is short notice, but we have some amazing members who could get it together if the team agreed.

I think the 10 year anniversary of his death should be played on. Yes, it is mercenary and bad form, but sometimes that is just the way it is.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: 16,726 yard run

Your fantastic ideas are always welcome.  Keep it coming.
Thanks
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 16,726 yard run

Ideas are great! Is it time for an action plan? How many could be in Chicago for the game day? Who will write the piece for the program? How many letters should be written to the team? Who should be addressed at the team? Who will write to the Payton Foundation? Lots of questions, but if we are going to get something done by November 1, shouldn't we start now? I copied info from the Payton Foundation Website here. Since there is a name and e-address for an events planner we might want to start there, with Nancy Wilson, at end of copied info.
WCPF Phone Number:
     847.605.0034
WCPF Email:
Information@Payton34.com
Fax Number:
630-552-7618

Postal Address:
    1905 Marketview Drive, #234
    Yorkville, IL 60560 
(Letters & Small packages/boxes may be mailed to this address)

WCPF Warehouse
(Space donated by Leader Express)
Wood Dale, IL 60191
 
WCPF Staff:
Connie, Jarrett & Brittney Payton - WCPF

Kelly Woods - Director WCPF

Nancy Wilson - Office Manager & Event Coordinator
Nancy@Payton34.com

22 (edited by marions Sat, 22 Aug 2009 22:42:51)

Re: 16,726 yard run

You are all great.  Please, make sure to speak on your behalf only and if you so chose to do as being "members"  of the CC Foundation. Stacie, the Excecutive Director, speaks on behalf of the Cholangiocarcinoma Foundation. 
Thanks a bunch,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 16,726 yard run

You are right MArion. We can only represent ourselves, not the foundation. BUT, I do think someone from the foundation should get intouch with them about submitting something for the program and getting signed stuff for an auction. Raising awareness is so important...not for the any other reason than those patients who dont know about the foundation and are missing the love, support, and information that this forum offers. I cant imagine going through this without the forum the foundation supports. It has truly been a godsend and to think that there are people out there who dont know where to turn for knowledge, experience and support is heartbreaking.

In my prayers, I often thank God for Mark Clements family and the foundation. So many people came before them, suffering this disease. Yet, there they were in their darkest time as a family and did the most amazing thing and started this foundation that has come to mean so much to so many of us. Then there were people like you Marion, who lost loved ones and help to carry the flag. This foundation offers so much to us who feel alone, hopeless, and are left questioning doctors who often have no experience with this cancer. It isnt that I am glad your loved ones got this cancer, just that you had the strength and the foresight to organise and administer this foundation. That is what is amazing and you guys need to toot your own horn. Because this foundation has made a difference, will continue to make a difference and the more people who know about it the greater the ripple will be.

I hope I am not coming across as too bossy or melodramatic. Take it as a compliment that this foundation means so much to me and the warmness of the forum makes us all feel a certain "ownership" (wrong word, but cant think right now of a better one) to the foundation. You guys have us all lined up, as an army, waiting to do battle and help.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

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Oh Kris.....we all wish for the same ....an answer and a cure to this disease.  We need to make sure to take the right path to achieve this goal.   There are so many things happening with the Foundation, so many contacts have been made, and there are so many more to be developed.  Absolutely, shake up the world, scream and fight for recognition and a cure for this cancer.  I am with you ...all the way as that is what I have been doing and that is what I will continue to do in the future.  This is what Stacie, Ricky and Sara have allowed all of us to be part of.  But, we just have to make sure that the spokesman for this foundation is recognized and honored in her position of being the voice of the Cholangiocarcinoma Foundation in order to achieve the goal all of us are working so hard for....A Cure for this disease.  Nothing should stop anyone from doing what he/she would want to do to help eradicate this monster of a cancer.  Certainly, I don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 16,726 yard run

Kris,

Thanks so much for your kind words.  It really makes all of the work worthwhile knowing that we have support like yours.

Let me clear up just a few things that might be helpful.  First, we have contacted the Payton Foundation.  I talked with their director last year.  We've read through their materials and looked at their numbers and talked about them at several board meetings.  Does the foundation mind if any of you want to participate in the run/walk activities...absolutely not.  What you want to be mindful of is the fact that the Payton Foundation does not do any research on cholangiocarcinoma.  They have two wings of research, one does research for children's cancers and assistance in that area and the other does "alternative" research.  So any money you raise and anything that you do will go to their chosen causes. 

Will we ever work with the Payton Foundation?  Possibly, it really depends on what happens in this next year or so.  As you all know Marion is involved at the NIH, this is very important as we are able to participate in ground level decisions that will affect research and research dollars going to cholangiocarcinoma.  We hope to find an advocate that will be able to participate at the NCI for this same purpose.  So, that we are working all possible avenues of research dollars for cholangio.

We are looking at a proposal right now that will continue funding for a young researcher who is focused strictly on cholangiocarcinoma.  We are working with another foundation made up of Dr's and researchers, they do not focus on advocacy at all.  However, they can not get funding through the government without advocacy so we serve different purposes, but together we hope to make some wonderful things happen - however we want all the monies that we grant to be used strictly for cholangiocarcinoma, this is where our passion lies and this is where our focus will remain.

We will be participating in a symposium in April this coming year, which will be bringing together the best and brightest minds in cholangiocarcinoma in the US.  We've want to work together to drive what is happening here in the US and we've got to get major cancer centers to work together.  Next year we will open the symposium to the world and this is where things will really begin to happen.  Once the US can come together and work together we will reach out to Asia, S. America, the UK, everywhere...  Can you imagine?

We've just finished translations of our first brochure in Japanese and Spanish, they will be on the website soon and will be downloadable.  The Thai version will be coming in the next few weeks.  We hope to begin translation of informational pages of the website in the next few weeks as well, first in Japanese and then we'll follow with other languages.  We will also be doing general updating of all the pages. 

There is a lot to do, but we are committed to making sure that you find the information you need and that you also find the support you need.  We appreciate so much all the volunteers who are assisting us to make this happen, we certainly couldn't do it without you.

Much love to you all

Stacie