Calling Linda, llight, Maggie, Jan, Ro, Diane, Culka, Claudia, Maureen, Barb, et al. Are we up to r

Here it is, Ladies,

I'm really excited and encouraged about the conversations here. A few weeks ago I, thanks to Maureen suggestion, I wrote to UPSC researcher, Dr. R. Wendel Naumann. Much to my surprise and excitement, he responded with recommendation with we raise money for research. No small task for anyone. Here is his correspondence which he said is OK to share here. It's a long read, but important information.

I hope there is interest to work together to raise money. We are the ones who will benefit. Let’s be proactive. I know we have many skilled people here – professional fundraisers, researchers, writers, etc. Let me know your thoughts on doing something Mary Ann-

First letter: Thanks for your kind note.

As you know USPC is a relative rare disease relative to adenocarcinoma of the uterus. We now know that complete staging and chemotherapy are both necessary to improve the outcome of patients with this disease. Unfortunately, there is still a lot we don't know. With my work through the GOG on the Uterine Corpus Committee, the biggest challenge we face is the lack of clinical trials for UPSC. The GOG has opened trials for patients with high risk endometrial cancers such as UPSC. To date, all trials that have tried to look at these higher risk cell types have closed prematurely due to lack of accrual (UPSC patients have been included in trials designed for all patients with endometrial cancer). Currently, only about 3% of all cancer patients participate in clinical trials that will lead to new treatments for cancer. This is not enough to support trials in relatively uncommon cancer types. It is important that cancer survivors get the message out about the importance of these clinical trials and support the mission of the GCF (cancer awareness and education) by encouraging donations to that foundation to do the same.

We are now working on new drugs for ovarian and uterine cancer which show great promise. However, the current stance of the FDA is that new drugs will not be approved if they are more effective in shrinking tumors but will only be approved if they demonstrate a survival benefit. Unfortunately, this very high bar is likely to make approval of new drugs very difficult (particular in ovarian cancer). I would also encourage you to organize a campaign to your Senate and Congress to increase the approval of new cancer therapies by the FDA.

Overall, my point is that it is our patients and patient advocates that are the real support in cancer research. We will continue with our efforts, but we need all the help from you we can get!


Second letter: …. I was actually out of the country for a couple of days but it was to work on
protocols for new drugs in endometrial cancer. There are some exciting compounds that will be entering into phase II clinical trials in the near future that may be particularly relevant to endometrial cancer.

You are more than welcome to post my comments on line (please edit as needed).

Concerning your specific question about UPSC research, one thought would be to put together a specific research grant. I think the GCF would be the best organization to work with on this endeavor if you decide to proceed. They are willing to handle things like this and I have posted their response and contact information below. Let me know if you have any questions.

Sincerely,

RWN


R. Wendel Naumann, M.D.
Director, Minimally Invasive Surgery in Gynecologic Oncology
Associate Director of Gynecologic Oncology, Blumenthal Cancer Center
Carolinas Medical Center
1025 Morehead Medical Drive
Charlotte, NC 28203
wnaumann@mac.com

Begin forwarded message:


From: Janet Wykoff
Date: July 6, 2010 1:51:06 PM EDT
To: wnaumann@mac.com
Cc: Karen Carlson
Subject: RE: Disease specific Awards/On behalf of GCF

Hello Dr. Naumann

Karen has asked that I respond to your email as she will be on vacation
for the next week and we didn't want to wait to get back to you. First,
thank you for thinking about us during your conversation with your
patient and for contacting us. GCF is always eager and happy to add to
the list of available research grants that we can offer - and to offer a
disease-specific research grant such as the one suggested here - Uterine
Papillary Serous Carcinoma - is certainly within the scope of our
program.

The starting level of our grants is $27,500 ($25,000 grant/$2,500 admin.
fee). In the event that we get several $10,000 plus donations
designated to research we will combine them to reach the minimum $27,500
level - as long as all parties agree to the research criteria.

Depending on the type of fund raising that the group does, we can offer
materials, etc. And of course, all donations are tax deductible. In
the past, people have held golf tournaments, hosted cocktail parties,
done mailings to friends, put together pledge activities - walks,
swimming laps, etc., and directed donations to GCF instead of sending
wedding, birthday or anniversary gifts. As you can see, quite a
collection of ideas.

I'm sure after you've shared this information with your patient that
there will still be additional questions I would be happy to help
wherever I can as is appropriate. Please feel free to contact me as how
you would like to move ahead.

Again, we appreciate you thinking of GCF and look forward to working to
make this happen. Thank you and...

Best regards

Janet Wykoff
Gynecologic Cancer Foundation
230 W. Monroe, Suite 2528
Chicago, Il. 60606
Phone: 312-578-1439
Cell: 312-315-1979
email: jwykoff@thegcf.org