March 23, 2009 at 4:00 pm #27530
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!
PattyMarch 23, 2009 at 1:11 pm #27529
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.March 23, 2009 at 4:43 am #27528
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.
PattyMarch 22, 2009 at 10:26 pm #27527roma35Member
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.
BarbaraMarch 22, 2009 at 9:26 pm #27526
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:
PattyMarch 22, 2009 at 7:30 pm #27525
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!March 22, 2009 at 7:13 pm #27524tessMember
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.”
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.
-TessMarch 21, 2009 at 8:23 pm #27523
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!!!!March 21, 2009 at 5:52 pm #27522marionsModerator
Barbara…I am disappointed as well about the very same reasons you are mentioning.March 21, 2009 at 6:35 am #27521roma35Member
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.March 21, 2009 at 5:25 am #2135
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:
I am going to plan on being there, probably with some family members.
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