Backstory, this was to be the first ever meeting of the SIO. Ann Fonfa had registered and shared on the patient/advocate listserv. Hal then asked the group to attend as well. He was sent an email stating, in part, that this was a ‘professional’ meeting, therefore no need for Advocates to attend.
Ann Fonfa wrote the following in December 2004:
“As to what I thought – Larry Norton gave the keynote address. He then left
immediately as he has NO interest in CAM at all.
Barrie Cassileth tried to keep everything on her track by practically
dictating the topics. However, questions were open and there was plenty of
time to hear everyone.
Lot of acupuncturists were there. Acupuncture for fatigue was one of the
‘allowed’ topics as is the whole area of botanicals and music therapy.
The Columbia people gave great reports and talked about translational
research. I complimented them on their speed to the clinic!
Overall it was good. A start. If they do not try to control too much, it
could be wonderful. Andrew Vickers continued to shock and dismay me (with a presentation on hydrazine sulfate and other ‘proven-not-to-work alternatives), and I
hope surprised some others”.
Dear Hal,
We support your efforts to receive an advocate entry fee for the 2004 Society for Integrative Oncology meeting (NYC). It is the right thing for this organization to do.
In fact, it is a bit surprising that they have not yet made provision for advocates as we approached them a very long time ago. Dr. Cassileth must be well aware that the advocate community has a strong and obvious interest in integrative cancer treatments.
Considering that FDA, NCI, NIH, the Department of Defense, California Breast Cancer Research Program, and other agencies have gratefully included advocates, this is truly a sorry situation. As graduates of Project LEAD* know, we bring our special perspectives to bear on problems that confounds the ‘experts’. We add unique approaches and ideas that can enhance any conference or event.
I hope to see you there. Our summary of this event will be featured on our site.
Sincerely,
Ann F.
cc: Barrie Cassileth,
Memorial Sloan Ketting
Ann Fonfa
President, The Annie Appleseed Project
www.annieappleseedproject.org
*Project LEAD is a training program in basic science designed by the National Breast Cancer Coalition. www.stopbreastcancer.org
Ann Fonfa wrote the following in December 2004:
“As to what I thought – Larry Norton gave the keynote address. He then left
immediately as he has NO interest in CAM at all.
Barrie Cassileth tried to keep everything on her track by practically
dictating the topics. However, questions were open and there was plenty of
time to hear everyone.
Lot of acupuncturists were there. Acupuncture for fatigue was one of the
‘allowed’ topics as is the whole area of botanicals and music therapy.
The Columbia people gave great reports and talked about translational
research. I complimented them on their speed to the clinic!
Overall it was good. A start. If they do not try to control too much, it
could be wonderful. Andrew Vickers continued to shock and dismay me (with a presentation on hydrazine sulfate and other ‘proven-not-to-work alternatives), and I
hope surprised some others”.
Dear Hal,
We support your efforts to receive an advocate entry fee for the 2004 Society for Integrative Oncology meeting (NYC). It is the right thing for this organization to do.
In fact, it is a bit surprising that they have not yet made provision for advocates as we approached them a very long time ago. Dr. Cassileth must be well aware that the advocate community has a strong and obvious interest in integrative cancer treatments.
Considering that FDA, NCI, NIH, the Department of Defense, California Breast Cancer Research Program, and other agencies have gratefully included advocates, this is truly a sorry situation. As graduates of Project LEAD* know, we bring our special perspectives to bear on problems that confounds the ‘experts’. We add unique approaches and ideas that can enhance any conference or event.
I hope to see you there. Our summary of this event will be featured on our site.
Sincerely,
Ann F.
cc: Barrie Cassileth,
Memorial Sloan Ketting
Ann Fonfa
President, The Annie Appleseed Project
www.annieappleseedproject.org
*Project LEAD is a training program in basic science designed by the National Breast Cancer Coalition. www.stopbreastcancer.org
