ImetelChat

Anyone know if his talk will be posted online?

Cheng, I believe snippets from previous patient conferences have been posted, don't know if they were sponsor driven or videos taken by patients and then posted. 100 patients can sign up, suspect some may wish to share the content of the meeting especially with Dr. T's presence. If anyone knows someone who is attending, I am interested in the answer to only one question currently: "how many patients from the original pilot study remain on drug" ? As Okarma used to say stay tuned. The only problem is that I have stayed tuned. During that time Garrison Keeler has given way to Chris Theile, the click and clack brothers are no more a pair...I hope we are not desiccated skeletons by the time this is over. bp

Anne claims that Tefferi is speaking on Sept 17. (Of course she also claimed that Jannsen had posted a GERN press release... she was reading some small Mexican web site and couldn't tell where she was. We're all way too old

Not so synical, Cheng. Teffri IS speaking on the 16th:

This is the 2nd Annual SF Bay Area MPN Conference for Patients. You will have the opportunity to hear the latest research and engage with four experts in the MPN clinical and scientific community. Confirmed to attend are Dr. Ayalew Tefferi from the Mayo Clinic, Dr. Ross Levine from Memorial Sloan Kettering Cancer Center, Dr. Vincent Ho from Dana-Farber Cancer Institute and Dr. Lloyd Damon from UCSF Medical Center. The event will include the latest research, therapies and news from our distinguished guests. This is a full-day event that will allow plenty of time for your questions and an opportunity to connect with other people living with PV, ET and MF. To ensure the proper ratio of patient and family members to medical experts, we are limiting the meeting to the first 100 people who sign up.

Agenda:
9:00 – 9:30 Arrival and social time (coffee and water served in the Atrium)
9:30 – 9:45 Welcome (Auditorium) Dr. Tefferi
9:45 – 10:45 Dr. Lloyd Damon - Pregnancy and MPN's
10:45 – 11:45 Dr. Ross Levine - Update in Labratory Research in MPN's
11:45 – 12:45 Lunch (included in conference fee)
12:45 – 1:45 Dr. Ayalew Tefferi - Update in Prognostication and Treatment in MPN's
1:45 – 2:45 Dr. Vincent Ho - Update in Transpant for MF
2:45 – 5:00 Panel session with doctors

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With a little bit of luck it will be recorded and published on one of the MPN information sites or Patient Power.

The date is 9/17/2016. See link below:

https://www.eventbrite.com/e/2016-annua ... 5768839292

Tangken, thanks for clearing this up.

Yeah, thanks Tangken. Now I know which day to take my anti-depressant Rhodiola supplement

(Assuming that anything is actually released of course, I'm still remembering ASCO where I was way too optimistic.)

Cheng, this meeting is about informing patients, not investors.

this meeting is about informing patients, not investors.

There is no way to separate the two. If Tefferi gives patients news on drug effectiveness, investors will know as well (especially those investors that send someone to the meeting).

That's right. I just mean to say that the angle is different. When patients are being informed, doctors tend to be very cautious with new data and drugs that are under development. Tefferi always has been cautious, so have been others (like Mesa, Verstovsek etc.). So I am not anticipating new front end data.

Hello Cheng, I think its important to not be so mercenary about this. Conferences like this are for patients and families. It should be limited. If only 100 can attend and one seat goes to a financial type, that in itself is a tragedy. We should not lose sight of the importance of this information being disseminated to those devastated by this disease. It is unfortunate that such an unholy alliance between money and medicine appears to be a requirement for advancement of knowledge. The level of presentations will be for patients and families, to answer their questions and to hopefully provide hope for the hopeless. These patient/family centered meetings are not about the money, nor should they be. Perhaps one day the presentation on bone marrow transplants will be unnecessary. bp

I have read, don’t remember the source and it has been 2-3 years ago, that Dr. Tefferi is primarily interested in the medicine and the patients with serious hemo diseases and apparently has little, if any interest, in the investment side of it. Based on everything I have seen and read since seems to indicate he is enthusiastic, dedicated and tireless in efforts only focused on the science and patients.

Hello Hunt, I believe you are correct. From everything I have learned, Dr. T is untainted and does not have a conflict of interest here. Look back at his presentation at ASH years ago. He was NOT present at the "independent" Geron review of his data the evening following his presentation. He has never as I recall ever been part of an industry driven presentation (industry sponsors presentations like the upcoming SF patient meeting routinely, I don't mean these meetings.) Dr. Lane however was present, perhaps because his data was preclinical in nature. Both are advisors to Janssen I believe. bp

Tefferi is fine, he fought against the big pharma push for JAK inhibitors. He's totally focused on getting something that works.

As far as the conference goes, there's no way to give patients data without it getting to investors. And there's no way to help patients if the patients don't know what treatments to pursue. Transparency is life, suppressing information is death.