Past Events

Board of Trustees Meeting
Date: February 13, 2004
Location: Union Club

Attendees:
Helen Moss
Richard Fleischman
Dr. Elizabeth McKinley
Dr. Jane Hart
Pat Fitzsimmons
Shanessa Jackson
Tim Rezore
Dr. Peter Whitehouse
Shirley Moss
Raj Secura

Minutes:

According to the minutes from the last meeting, the Board met and authorized Ms. Moss to negotiate a contract for the Deepak Chopra event.

According to Ms. Moss this is a very important meeting.

Financial Report:

Ms. Moss will submit a corrected financial report at a future date.

Expenses:

1. A trip to the Holistic Global Conference in India, which was the most important money ever spent as it set the energy, gave a purpose and the mission and opened up many doors.
2. A trip to the Center for Mind, Body Conference in Washington D.C.
3. Tea Party for Miriam Stone in April. Ms. Stone's book and a review on the Tea Party can also be found on the website.
4. Conference attended by Ms. Moss and Trina Becksted. Ms. Becksted is the promoter on Cloud Nine Marketing for Chopra. Deepak Chopra was to be in attendance. Ms. Moss noted that she has been honored on the Board for the National Foundation for Alternative Medicine. That group along with the Center for Mind, Body Research and about six or seven other organizations that are on Integrated Medicine and Comprehensive Medicine met in Washington. It was a meeting of the people. It is so important; the connection made nationally when one goes to Washington D.C for these conferences. There is no report on the conference because Ms. Moss met Chopra again, NFAM again, Dr. Ralph Moss and got a lot of information. Dr. Berger probably knows that going to these conferences can be very valuable for networking.
5. Tea Party with Dr. Barrie Cassileth.3000 mailings went out. Ms. Moss noted that the website should be stating this money because this will afford us to advertise the website whether it is in the Plain Dealer with 1.1 million readers on Sunday or the other newspapers. It had been mentioned to Ms Moss that websites are mainly storefronts and for the Foundation, the website is the store itself and currently consists of forty pages with many connections.

Subtotal

1. The Grant to the Center for Mind, Body Medicine was to the Gathering Place and to Dr. Jane Hart when she was with YMCA, Elizabeth McKinley who paid her own way. She also was a grant recipient. Both these two young women spoke at the Tea Party and there was very positive response on this. This is reported on the website as well. Everything in the website is reported so that one can spend a few minutes or hours on it but the intention is to have all the links for those who want o read everything about the Foundation.

(Other subtotal items and Miscellaneous items omitted)

Report from Grant recipients:

A two-page summary was handed out. A brief description of what the Cancer Guide to Professional Training Program in California was given by both Dr. McKinley and Dr. Hart.

Dr. McKinley reported that this was a seven-day intensive training program including a lot of lecturing as well as a small group component. Every day the recipient met with his or her own small group for several hours. The idea was to train all the people in attendance to be integrative cancer care counselors. Some of the people in attendance were physicians, social workers and other healthcare providers including energy workers, massage therapists, physical therapists and a group of survivors and activists. Topics learned about were very broad, ranging from cancer as a process and a journey, details of biology of cancer and conventional therapies, psycho-biology and the connection between mind and body, how to read and paraphrase the medical literature, creating an integrative practice with introductions to multiple complimentary and alternative therapies. The idea that at the time of recurrence or metastatic disease, what that patient might require in addition to what were some of the alternative therapies that might be offered at that time. Also there was a long description of death and dying and the end of the cancer process.

The major themes that were to train providers regardless of who they were to find and give information on complimentary therapies to cancer patients and to help guide providers to create integrative and comprehensive care programs. There were many discussions on how to set up this kind of program because it isn't exactly mainstreamed. There were people there representing the Cancer Centers of America. There are several programs across the country where they have actually created both a freestanding integrative cancer care program. Timothy Britzell did much of the lecturing on how to create integrative freestanding programs. There were physicians who had a more holistic oncology practice; there were so many different kinds of programs that were described. There was the opportunity to ask questions on how to ask these individuals how they set up their programs. Some of the questions centered on financial ramifications, how to code the events etc. It was very comprehensive.

The Cancer Centers of America are really freestanding although they do have a hospital integrated within them. There were other people that were talking about a totally freestanding center, separate from any hospital, but most of the programs were part of a hospital program.

Ms. Moss added that when she heard the representative from the Cancer Centers of America speak, she asked how can they afford to bring integrative medicine into the mix and they don't charge for it. They do chemo-radiation and surgery and all the traditional treatments. They are one profit center at the hospital and all money goes into one place, not various departments, and that is how they do it in the main hospital.

Dr. McKinley responded that she thinks that they are all the same, however she is not positive about that. He was really talking about one particular place.

The third aim according taken away according to Dr. McKinley, was to teach the providers no matter whom they were to really support the patients and the families as they move through and beyond their experience with cancer and its treatment. So they are wide-ranging goals.

Dr. Hart reported that both she and Dr. McKinley had moments where they were overwhelmed with the amount of material and the amount of information that was made available to them and that it would take months to digest all the material. They felt that for people there who did not have a medical background because it was a lot to take in and if you couldn't process quickly some of the scientific and medical information and data that was shared on an ongoing basis, and they would have difficulty sorting through the information for facts.

Both Dr. McKinley and Dr. Hart agreed that they would be going through all the data and do their own research about what was said at the conference. In terms of highlights of the meeting, Dr. Hart said that the number one message that they got had to do with nutrition and that all of us are nutritionally deficient in some manner. When looking at the cancer patient however when you are looking at host defense issues and building up immunity during illness, it is important that the patient be optimized from a nutritional standpoint. According to Dr. Hart, there is so much more to learn about how to make that happen for us and for patients. Both felt this message given at the conference was very strong and it is not as simple as telling someone to take a multi-vitamin. It becomes a very complex issue.

Ms. Moss added that when she heard the talk by the Cancer Treatment Centers of America in Cleveland, the nutritionist who spoke, was trained at a very good nutritional school and she stated that she didn't get any more training than any nutritionist. At the Cancer Treatment Centers of American, for every 100 beds of cancer patients, they have six nutritionists and those nutritionists talk to the cancer patients every day and there is a study that shows that the more weight you lose during chemo treatment, the lower you chances are of survival and that is why they do that. Ms. Moss said that when she went through her cancer treatment she lost 25 pounds in two weeks and she knew more than the nutritionist did and her physician knew nothing about it and that weight loss is not pain free. The nutritional part is the survival in nutrition.

Dr. Hart said that the Center for Mind, Body Medicine is the sponsor of the training out of Washington D.C and their website is cmbm.org. James Gordon who has been one of the spearheads in the complimentary medicine front is the head of the organization.

Dr. Secura pointed out that he hasn't seen any research towards ODR (optimal daily research) and he feels that is a big lack. Dr. Secura went on to point out that the research from Medline says that 2000 international units of vitamin E affects memory in a positive way in seniors and the RDA says 200 international units and that is 10 times more than is recommended in certain situations.

Dr. Hart responded that one of the main concerns is taking the information out there and to continue to research and that it isn't enough to stop at points that are made, but to continue to do more research. She further pointed out to Dr. Secura that his points were brought up at the meeting and that the ODR's are not known and that as physicians it is important to be able to filter out what is best for the individual.

Dr. Hart's second point made was that Dr. Steven Sagar, a holistic radiation oncologist, discussed what happens during the active treatment phase in terms of a patient undergoing chemotherapy or radiation and the potential interactions in that treatment related to taking supplements and that it is still a vast great unknown. He wanted to say that it was his opinion that a multi vitamin during the active and non-active treatment phase was allowable. This was an important message for the people that were there because it is an issue that always comes up among physicians.

Dr. McKinley pointed out that this second point is only true during active chemotherapy and that is the point that they were trying to make. She also noted that they had several days to talk about anti-oxidants and their role with and without chemotherapy. The take home message was there are multiple opposing views and that enough is not yet known and the bottom line is that it is probably all right for someone to take a muli vitamin during active treatment. In other words, don't go more than the RDA.

Ms. Moss added that people are going to do and not tell their doctors. She further pointed out that she chose not to take any vitamins during therapy, however it is her feeling that once therapy is over, the medical profession does not follow through with the nutrition advice. Ms. Moss referred to Dana Farber's study on acupuncture and increasing vitamin C and the Memorial Sloan-Kettering study on MAITAKE Gold and that Dr. Cassileth pointed out to Ms. Moss that it is so powerful that if there is one thing you take, you take the MAITAKE and drop everything else because that is what the studies are showing early on. Ms. Moss's feeling is that you must get your health back faster after the chemotherapy to have a chance to beat it.
Dr. Berger stated that it is feeling that it is extremely important that vitamin therapy be supplied by the oncologist not by an organization or the person that is giving the chemotherapy because some chemotherapy specifically works by antagonizing the effect of the vitamin and if you take vitamins you will have a toxic effect by nullifying the effects on the tumor. Dr. Berger agreed with not taking vitamins until after the chemotherapy is completed

Ms. Moss referred to the weight loss issue by addressing what one oncologist told her with respect to losing weight. The oncologist told her not to lose weight during therapy and so she gained five pounds by eating whatever would put weight on her, not necessarily healthy foods, rather anything that would put weight on. She went on to say that after the therapy when she could not eat healthy, she ate calories in order to keep the weight the same until her body started to feel better.

Dr. Hart said that overall what she learned was that the important things learned was to continuing opening the dialogue between physicians and patients about integrative care as both parties are going to have anxieties, the oncologist and the patient. Acknowledge the anxieties and talk about the fact that you are anxious and then begin to have a dialogue and start from where you are. Dr. Hart pointed out that all too often the patient feels as though the door has been shut and physicians need to guide the oncologist and the patient to form these relationships.

Dr. McKinley reported that they would like to use the training at the medical school because that is the best way to start the dialogue; with new medical students who will be the next generation of physicians. She further reported that they have been looking a funding opportunities through the Lance Armstrong Foundation and are looking for others. One thing they thought about was creating an elective and a clinical experience for medical students and introducing a more holistic approach to the cancer survivor not only from diagnosis but also from survivorship and beyond. Grant support is being sought for this idea.

Dr. Hartt said that they were looking at a 12-week training session where each session is about 2 hours long where they begin to talk about the breadth of the issues of nutrition and psychosocial issues and death and dying etc. They would then have them act as liaisons as students in the community with cancer patients in helping support them in some way.

Ms. Moss pointed out that she is so passionate about this cause because she does not intend to wait for the "next generation." There are people out there who are not waiting either and the medical profession has to understand that something is needed now. The Chinese Healers visited by Ms. Moss stressed diet, diet, diet, and that is something one does not have to wait for.

It was Dr. Hart's final comments were that the conference has some "kinks" to work out at their administrative level and that it was a bit broad and confusing. Dr. McKinley said that she felt the conference should be "tiered". There were a lot of physicians and a lot of lay people and it is tough to pull that together.

Ms. Moss asked Dr. McKinley which topic, "Cancer Guide" or "Food as Medicine" did she find the most beneficial and Dr. McKinley stated that she thought it was the "Food as Medicine" since she felt as a physician she knew much of the material, and was looking for more integration and it wasn't done as well as she thought it could have been done. It was Dr. McKinley feeling that if the conference would "track" the conference and give the physicians more science.

Ms. Moss referred to the conference coming up in November. At the Comprehensive Cancer Care Conference one could get the tape, you could talk about a specific thing, there was much more structure. At the International Conference on Holistic Medicine was not confusing. One could take things away that one could write a report on, where at this conference it was difficult to write a report. Ms. Moss said that in the future, they would look more at the "Food as Medicine" as opposed to the "Cancer Guide".

Dr. Hart stated that physicians must find ways to guide us as well as others in the context of what they know.

Dr. McKinley stated that the "Food as Medicine" gives a much better sense of nutrition.

Website

Ms. Moss reported that the website is currently 40 pages long and one can read as much or little as they wish and has asked all Board Members to look at it. Ms. Moss pointed out that in conferring with Shanessa, Ms. Moss stressed that the website must be attractive and professional; it has to look good and inviting to people; it has to have an ease of moving around. According to Ms. Moss the website is a "port hole" to what we stand for and we must produce an attractive ease of website and a website is always a work in production. Our resources are our linkages and the link to "The Center for Mind, Body Research" enables one to read and the transcript for every conference, everything that has been done in three years. Ms. Moss's talks are also on the website, both the transcript and listening capability. Nothing locally has been added to the website, however the visit to Boston, under "Inpatient" was added as there is no apparent downside risk. The website is for anyone with cancer and/or their relatives who want information related to treatment/recovery. For example places to go for recovery/respite.
On the "Outpatient" link there is information based on a meeting that Ms. Moss and Mr. Fleischman had with the gentleman from India who received $250,000.00 from NIH on how to set up clinic on outpatient that is in Northeastern Pennsylvania. Another topic under the "Outpatient" link is on "Herbs". This information came from the Memorial Sloan-Kettering website which is based on their research. Ms. Moss asked that those who look at the website and find things that they would like to see changed or added, to let her know. According to Ms. Moss the website has become the "store" itself and if the Foundation can maintain the website with donations, this will give the Foundation greater visibility.

Tom Versedez, a writer from the Plain Dealer who has cancer has been contacted by Ms. Moss and he has given permission to go to his website and get his six stories. Ms. Moss offered that she would never take chemotherapy, however he has a tremendous desire to live and a wonderful spirit. Ms. Moss asked the Board members to read the articles for their input.

Another site, NOAH, lists what is Alternative, what is Integrative etc., and what they are and how might they help in the Mind, Body, Spirit, since that is the first thing one has to learn.

It was pointed out by Ms. Moss that the focus of the website is "Integrative Medicine" and "Comprehensive Medicine" without offending anyone. Ms. Moss wants the website to be "upbeat".

Dr. Berger and Ms. Moss will get together to go over the medical problems he gleaned from the website. Dr. Berger pointed out that he felt that it would be helpful to hold focus groups as it takes a great deal of interaction on deciding on how to make the website most effective.

After much discussion, it was agreed that other resources will be reviewed for addition to the website. Ms. Moss asked for input and stated that changes can be made.

Chopra Event

[Financial details omitted]. People like to give to "something" thus this is a marketing tool, this event. This gives the Foundation great visibility via the website and gives people the opportunity to start looking and thinking when they have cancer. The people in turn push the physicians. The Foundations' goal is the middle-class; it is for the doctors at the Cleveland Clinic, the doctors at University Hospital, the people who donate to those hospitals, people who know a lot of people. Currently, the Foundation is running five ads in the Sunday Plain Dealer that will reach 1.1 million people, starting February 22, 2004. Doug Clifton, head of marketing at the Plain Dealer is helping with the ads. These ads will help to raise additional monies.

The Foundation has also contracted for one ad, to see how they do, in all Suburban Sun newspapers.

Ms. Moss pointed out that after much discussion with the Chopra organization, she informed them that the Foundation is the underwriter; therefore the ad will feature the Helen Moss Breast Cancer Research Foundation with Deepak Chopra as the guest. The Chopra organization did approve it. Handouts will also be available two weeks prior to the event and will be placed in various locations. All this information will be available on the website. There is also a link on the website to Dr. Ralph Moss's works on Cancer Care and Integrative Medicine.

Ms. Moss went on to speak of the effect that the Chopra event will have on the establishment and stated that they will be turned off by some of the things he says. However, they will be seeing it at Severance Hall; they will see that the Cancer Society and the Heart Association endorsed it. Ms. Moss feels that she will also be able to get it endorsed by the major labor union in the city and the County Commissioners, the Mayor and the Governor on April 26th.

The newsletter section of the website is not completed as yet, however Ms. Moss has talked with Dr. Fox. Currently there is no information compiled on the Cleveland Clinic because they have no place to send people as of now. Dr. Ralph Moss wrote a letter that is very inspirational and Ms. Moss asked Dr. Moss about putting a forward on the website to that a very inspirational letter written by Dr. Moss. Dr. Udian also gave her a story about the insensitivity he found with respect to his illness.

There is a conference coming up on November 17th-19th, on Integrative Oncology where some of the most famous people in the Country are recognizing Integrative Medicine. Ms. Moss feels that instead of the Foundation paying for people to go to the Conference they should advertise the Conference to the medical profession so that they can pay people to go as the best use of the Foundation's money might be to "preach" and to get other people to go. Ms. Moss will talk to Dean Berger and to Joan Fox in order that the Foundation can get the establishment in Cleveland to attend the Conference.

Tea Party - Ms. Moss pointed out that they need to be looking for someone to come in to speak on November 7th (tentative date) and then advertise the speaker for the Tea Party in the Plain Dealer along with the Chopra event.

Business

[Omitted]

Website

Ms. Moss has met with the head of Emerald Healthcare and he is going to meet with WVIZ with Ms. Moss on Health Quest.

Dr. Cassileth has spoken with Ms. Moss on what can go into the newsletter.

Dr. Fox's (Cleveland Clinic) Report

Dr. Fox reported that they are opening an outpatient center, a center for well being, that will be on prevention and focusing on various approaches to chronic diseases and cancer. The center hopefully will open in April and they have the medical director on board now. They are also working with the consultants working on final details for the center. The approach that they took was to go slowly and to build awareness with the physicians/physician education. According to Dr. Fox the physicians are just getting to the point where they are comfortable with the plan. Dr. Fox wrote the Business Plan and submitted it to the Administrative Council and the Board of Governors in December. There was no argument or disagreement from either body. Dr. Fox believes that the physicians are becoming more aware and that this stems from the public, the patients. It is clear that the physicians don't know what to tell their patients as they are used to being the authority. Dr. Fox stated that she has learned over the past two years while providing educational seminars, that the physicians are asking, "What do we do now. We don't know what to tell the patients. What do we do now"? This was the package that Dr. Fox presented to the Administrative Council. Basically that the physicians are human and they really don't know how to deal with it. According to Dr. Fox, what is needed is a centralized resource where the physicians were trained and then the physicians throughout the Clinic would have a place to refer their patients to, to use as a resource.

Ms. Moss noted that on February 22nd there will be many hits on the website and asked Dr. Fox if she would write something for the newsletter portion of the website in order that Ms. Moss could put a link on the website for Dr. Fox, which would lead people to what she has done, whom she has had as speakers to the physicians, what her dream is. Ms. Moss reiterated that what she is interested in is "something inspirational" as she feels Dr. Fox's story is such. Dr. Fox agreed to come up with something for the website.

Ms. Moss pointed out the importance of offering individuals a place to go for information on all topics related to the disease of cancer. Interestingly she pointed out that the majority of people erroneously believe that there are studies done on their individual type of cancer. The patient needs to ask the doctor about their individual form of cancer and what is available for them.

Conclusion

Ms. Moss announced that she would be meeting with Dr. Berger and Dr. Fox about whom they would think would be the most enlightening speaker for the Tea Party in November as well as how they think the Foundation might best advertise the Society for Integrative Oncology event, November 17th - 19th.

Ms. Moss will continue to work on the Mission Statement. Ms. Moss emphatically states that she wants the "website" to be incorporated into the Mission statement.

Ms. Moss also announced that she would be calling Dr. Farber to get better studies on "white blood counts" for the acupuncture and the Memorial Sloan-Kettering on the MAITAKE.

In response to Dr. Secura's question as to information pertaining to "Breast Cancer for both genders", Ms. Moss pointed out that 1 in 8 women get breast cancer and it is probably the most advertised, however the website eventually will be broadened to include both genders.

Meeting adjourned.