November 13, 2008 at 6:52 pm #24148saraMember
Here is a summary from our meetings last weekend. Some of it Stacie already mentioned, and some of it is new:
Stacie, Rick, and I joined Dr. Kaseb, Dr. Javle, and Dr. Wolff from MD Anderson for dinner on Friday evening. It was a great dinner, with many potential growth opportunities discussed. Overall, the doctors were happy to see how well the website looks (Great job, Rick!), and are optimistic as to what we can do to help in their efforts. Worth noting, the recommended that we consider developing a national treatment database that would be restricted to doctors, and that could be updated by the specialists in the area of cholangiocarcinoma. We will proceed with this endeavor, seeking grant money from pharmaceutical companies to support this effort. Rick, of course, will guide us in the technical aspects of the database, and Stacie and I will work like mad to get the funding needed to support a great database.
Additionally, the doctors commented on possible grants that we could award to young researchers generate interest for these researchers to spend their careers on cholangiocarcinoma research. Foundations like PanCan and Komen have similar programs, and both foundations can trace recent developments in research to researchers that have received grants in the past. (this is a long-term project, so results are generally in the 5-10 year timeframe rather than 1-year)
The doctors were receptive to the idea of hosting web-based conferences to highlight clinical trials, new treatment options, etc. We will begin developing these conferences soon. Sara is heading this function, and we will work hard to properly promote these events so the community can participate.
Annual CampaignNovember 13, 2008 at 2:26 am #24147jeanMember
Thanks Stacie for all that ALL of you do. The energy and dedication with which you fight this fight for all of us, means so much. Just know how very much you are all appreciated! So glad to hear that Marion is on the board…you couldn’t have picked a better representative for us!
JeanNovember 12, 2008 at 5:02 pm #24146lisaParticipant
Thank you so much for the update. It’s so heartening to know that there are people like you and the other members of the board dedicated to making a difference.November 12, 2008 at 2:26 am #24145lainyParticipant
Thanks, Stacie, why don’t you send me some of your cards. You can look up his “stuff” under Dr. John Kresl Phoenix.November 12, 2008 at 12:32 am #24144stacieMember
We would love to talk with him. Let me know if you need some of my cards so he has all of our contact information.
StacieNovember 11, 2008 at 11:28 pm #24143lainyParticipant
YES< YES< YES! Also, Stacie, I mentioned and apologized to Teddy's Radiology Oncologist who is the cyber knife doctor at St. Josephs here, that I forgot to being some brochures I have for his office on the CC ORG. He was very interested and told me to bring them mid-December when we come for the Cyber knife and after looking them over he may contact you to see how he may help! This man is a Cancer God!November 11, 2008 at 10:43 pm #1717stacieMember
I want to give a very brief update on our meetings in Houston. I am out of town for the next few days and will give a more lengthy update when I return.
We had a great meeting with Dr’s from MD Anderson on Friday evening. We spent about 2.5 hours discussing cholangiocarcinoma and what we could do together and independently to make a difference.
We discussed sponsoring a National Database of cancer centers treating cholangiocarcinoma. This will be a place where physicians will input patient treatments, course of disease and other critical data, that will be accessible to other physicians treating cholangiocarcinoma. Can you imagine how amazing this will be for patients.
We are also excited to announce that this summer we will be starting the first annual fund-raising campaign for cholangiocarcinoma. We will use the money raised from this annual campaign to support young investigator grants focused on research in cholangiocarcinoma.
Also, we have added a new board member. One is loved by all of you. Marion Schwartz. Marion will continue to head up the advocacy end of things for us, but her input on the board will be invaluable.
I think Sara will update on a few more of the specifics and then you will be able to sit back and watch Rick go. He has already begun as he has added donate buttons for those who want to donate from Canada and Europe. Thanks so much for your patience with this, we are trying to make things as easy as possible for everyone.
My heart feels like it could burst. It could not have been a more encouraging meeting and I got to spend a weekend with people I adore, serving more people that I adore. Who could ask for more than that!
Love to you all
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