Jul 17, 2010 - 12:05 pm
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
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.
R. Wendel Naumann, M.D.
Begin forwarded message:
From: Janet Wykoff
Hello Dr. Naumann
Karen has asked that I respond to your email as she will be on vacation
The starting level of our grants is $27,500 ($25,000 grant/$2,500 admin.
Depending on the type of fund raising that the group does, we can offer
I'm sure after you've shared this information with your patient that
Again, we appreciate you thinking of GCF and look forward to working to