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grasshopper1

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ANNIE APPLESEED PROJECT
June 17, 2010

Numbers of studies have shown that social wisdom is worth its weight in gold. Anne's site provides a special kind of social wisdom, developed over years of carefully examining input from cancer patients and resources from all over the world. Its vital that this foundation and web site be recognized, supported, and held up as an example for the right way to make positive impact on our struggling healthcare system, where caregivers struggle with red tape, and have just a few minutes to spend with each patient. Patients, even those with insurance, suffer. My own particular story with Anne's foundation relates to alternative therapies used to improve patient outcomes in stem cell therapies at Stanford Hospital. Stem cell research holds great promise for future cancer treatments. However, what is missing from the research and treatment picture is patient care. Outcomes of stem cell treatment depends a great deal on how well patients can survive the side effects and keep their spirits up while undergoing continued horrendous discomfort and beating the odds. Typical hospital stays are 45 - 53 days post transplant. Most of them, by the time they receive this kind of treatment, have been through chemo/radiation at least once. So its even more important that they receive support for their patient centered challenges, in order that this promising technology is used optimally, now and in the future. The alternative methods we used with patients with autologous stem cell bone marrow transplant at Stanford Hospital enabled our patients not only to recover on average 2 weeks ahead of expected hospital stays, but also to quickly head off fevers, nausea, mucositis, and a number of problems that often lead to failed treatment. In addition, the patients had good spirits. Although we did publish an abstract about our experiences in Psychoneuroimmunology 2003, there is currently not a good vehicle to share the story of these patients with other patients. Anne's site fills this gap. One patient described it as "When you receive a diagnosis of cancer, when they tell you have the big C, its as if you have been hit by a semi truck. The news itself is enough to make your life feel like confetti being tossed up in the air." Its up to the patient to figure out how to pull the confetti back into a new life, with healing. Each person is unique, and our spirit and emotional life are a big part of our healing journey. Anne's site provides a wide range of carefully screen and checked stories to encourage patients and give them control over their healing journey, despite the lack of time our physicians may have for them in their stressed day. More generally, Anne's site provides one stop shopping for anyone with cancer who wants to investigate alternative ways of coping with side effects, treatments, and/or find others who might be emotional or spiritual support. By last count, her site was pointed to by over 5 million people. Its obviously useful. We in the U.S. live in a medical culture where many physicians treat patients only by the books they used in medical school. If you are a thinking individual, and not influenced by politics/money but are rooted in patient centered thinking, Anne's site provides a unique, strategic, and necessary bridge between what our current medical system IS and what it can be. Numbers of studies have shown that social wisdom is worth its weight in gold. Anne's site provides a special kind of social wisdom, developed over years of carefully examining input from cancer patients all over the world. Its vital that this site be recognized, supported, and held up as an example for the right way to make positive impact on our struggling healthcare system. Cindy Mason, CMT, Ph.D. Research Associate, Stanford University Founder, www.21stcenturymed.org Virtual Faculty, Future Health Technology Institute

The Great!

I've personally experienced the results of this organization in...

As founder of the Humans Without Borders Project, a volunteer organization to educate the public and health professionals about the science of healing touch, we benefitted from Anne Fonfa's organization in order to meet some of our organizational hurdles.

Ways to make it better...

If I had to make changes to this organization, I would...

I would increase exposure among funding agents in order to create a steady revenue stream to keep the funding for the web site secure. A 5 year commitment, at this juncture, would support focus on building content.

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

quality information and caring at a time when our medical system is a house of cards

The kinds of staff and volunteers that I met were...

exceptional, setting new standards for the future of healthcare.

If this organization had 10 million bucks, it could...

Increase visibility of the website, create web based educational media for public access to health education, create a video series rather like TED but specific to patient centered success stories around cancer, launch a journal, sponsor speakers, etc.

Ways to make it better...

no need to complete this sentence, its been a good experience.

In my opinion, the biggest challenges facing this organization are...

securing funding so there can be a concentration on content

One thing I'd also say is that...

if more healthcare was organized like this, we would all be better off.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

MY ROLE:
Professional with expertise in this field & I worked at Stanford Hospital with stem cell oncology patients. I work with Future Health Technology Institute, Cambridge, Mass.