9/07 Ann's first full paper is published: Patient perspectives: barriers to complementary and alternative medicine therapies create problems for patients and survivors. Integr Cancer Thera. 2007 Sep;6(3):297-300. 12/03 To hear and see Ann speaking on the Lance Armstrong Foundation 'Live Strong' site, go to this http://www.livestrong.org/site/apps/nl/content2.asp?c=khLXK1PxHmF&b=2661271&ct=3755463. Ann was interviewed along with other cancer survivors at the Center for Disease Control (CDC) meeting on Cancer in 9/03 8/17/03 At a recent conference, Cancer on the Internet, sponsored by the European School of Oncology, we heard that visitors like to see a photo of the creator of a website. So here is Ann Fonfa's picture from September 2003. She has finally (after nine years of very short hair) grown it in. Now it is wavy and wild, she calls herself 'Fluffy'. To hear an audio of Ann Fonfa's cancer journey, recorded in 2004, go to this link: http://www.kurtgreenberg.com/Secure/Content/cb.asp?cbid=83 Ann was diagnosed with invasive lobular carcinoma of the left breast after she found a lump in January 1993, using Breast Self Exam (BSE*). She had a lumpectomy and was given an axillary node dissection without her "INFORMED" consent. She was Stage 1 at that time. She refused radiation due to reading papers that indicated NO survival advantage. See Richard A. Evans, MD's website (www.texascancercenter.com). She was (and is) chemically sensitive and was afraid to do chemotherapy. Her readings indicated that as a Stage 1 with slow growing (S phase of 3.5%) cancer it was unlikely she would benefit from this treatment. She joined a support group in NYC at SHARE (2/93). (212)719-0364 www.sharecancersupport.org Women in the newly diagnosed group asked what she planned to do and when she mentioned alternative therapies a study group began. This study group has met monthly since early 1994. Speakers are invited and topics of interest to the community of people with cancer are discussed. Many of the early reports of The Annie Appleseed Project grew out of this. In 1995, Ann had the first of a series of local recurrences. The small tumor .6 cm, she felt had a second beneath that showed up during the surgical biopsy (lumpectomy). She began intensive use of metabolic therapy. A few short months later more tumors developed - 6 - all around the nipple of the left breast. At that point, when the biopsy proved to be malignant, she had a mastectomy. Less than a year later, the right breast developed Paget's Disease of the Nipple. This usually indicates a malignant tumor but none was found. Thus the diagnosis was Stage 0, but Ann had already undergone a mastectomy. She went to Mexico to a clinic that offered the Gerson Therapy (see Cancer Clinics for the complete story). Finally Ann began developing a series of tiny tumors on the chest wall left side. These continued to develop despite many efforts. The Chinese herb protocol was what finally stopped this. See the story in this section. Ann is NOT a doctor and has NO MEDICAL TRAINING. She is a patient like you. She chose to become an advocate and an activist. You can do it too. Make your life count. Stand up and be counted. Ask for studies immediately to explore the entire world of possibilities known as complementary and alternative medicine. Ann attends many scientific and medical meetings around the U.S. and sometimes in other countries. She speaks out/up from the patient perspective. This is a voice that needs to be heard. There are some very powerful advocates in the patient community. Some of them have contributed reports to The Project. Sometimes she is asked to be a speaker and will tell the audience how much patients need access to options. She speaks for and to patients, health care providers and government officials. Ann also speaks about her personal choices, as well as how and why she came to make them. See pages on protocols. She submits abstracts on issues designed to raise awareness in the medical, scientific/research communities. Ann was a member of the National Action Plan on Breast Cancer, Etiology Working Group, which was a public/private (government/advocate) group formed by President Clinton to work on issues. She was chosen as one of MAMM Magazine's "50 Who Make A Difference. In February 1999, she was honored by the National Organization for Women with the Susan B. Anthony Award. Ann's story has been told in "Women Confront Cancer" edited by Margaret J. Wooddell and David J. Hess. A front-page article in "Natural Healing & Alternative Medicine", a newsletter also discussed her experiences. (Edited and published by Mike McGrath of Rodale Press), and most recently her story appeared (p.76) in "I Beat Cancer, 50 People Tell You How They Did It" (Awareness Publishing). Two newer articles are on this site - see the front page for more information. Ann was invited to sit on an Education Advisory Board for the National Foundation for Alternative Medicine (2002) www.nfam.org and is a recent (2004) member of the US Cochrane Consumer Coalition (CUE), serving on the newly formed Behavioral Advisory Board (2007) and Adverse Events Group (2006). She is now the advocate representative for Fox Chase Cancer Center on the Breast Cancer and Environmental Research (NIEHS-sponsored) program. Ann serves as the Legislative Chair for the Florida Breast Cancer Coalition Research Foundation (2006). In 2007 she was invited to be part of the Susan G. Komen for the Cure Lesbian, Gay,Bisexual,and Transgender National Advisory Council. And in 2007 Ann became the Florida Field Coordinator for the National Breast Cancer Coalition. In September 2007, Ann had a paper published in the Journal of Integrative Cancer Therapies (Sage Publishing). OUR BOARD OF DIRECTORS Our Board of Directors consists of Ms. Mahin Motamedi, TX and WI, Ann Fonfa, Delray Beach, FL, and Ms. Donna Weintraub, CSW, Highland Falls, New York. Donna Weintraub has been a New York State Certified Social Worker (CSW-R) for twenty years. She has worked in various medical and mental health facilities, including Memorial Sloan Kettering Cancer Center in New York City. She hopes for improved access to health care, including therapies which are considered alternative to the status quo in America. Born on 9/19/42, Mahin Motamedi Witkowski has a BA in Business Management. She worked for Miller Brewing Company, Milwaukee, Wisconsin, as Managing Editor of Employee Publications. She also worked for J.F. Ahern Co. in Fond du Lac, Wisconsin, as Director of Marketing Communications. She then created Witkowski Graphics, a print communications business of which she was president. After being diagnosed with breast cancer in 1999 she chose retirement from the business world and concentrated on natural healing. She joined the Amazons as well as the Iodine Listservs where she engages in exchange of information about CAM and natural healthy living. *Breast Self Exam: perfomed monthly in the week after your menses or at a chosen date if you are postmenopausal. Men get breast cancer too. Between 1400-1800 are diagnosed annually. PLEASE FIND LATEST RESULTS BELOW THIS SUMMARY. I began using nutritional intervention and supplements in 1995. I take the basic antioxidants: Vitamin C, E, A, Selenium. I also take garlic tablets, green tea capsules, melatonin(in the evening), N-Acetyl Cysteine,Vitamin D, niacin, flavinoids, and Co Q10. I also take various other antioxidants like alpha lipoic acid and grape seed extract. These choice are based on my readings. I do not believe in taking just one vitamin. Most studies in Western medicine try and reduce to a single element and look at how that element works with cancer. I do not believe that it is a useful method. I am convinced that it is much more appropriate to take a panel of vitamins and supplements. I also juice daily. This is a part of most holistic protocols. I use the Gerson method, i.e. carrot and green apple juice mostly. I add potassium to the juice. Lately I have begun putting some greens into it also. I added ginger some time ago. It tastes great and it is very healthy and full of vitamins and nutrients. I have been using a Champion juicer since 1996. I own 4 different types. Anyone who has used a juicer knows that cleaning it is the hardest part. I find the Champion easiest to clean. I just place a plastic bag over the spout and tie it with a rubber band. There are other manufacuters who have made a similar style juicer. I also use detoxification methods. There are several that seem useful. One of the most important is coffee enemas. I learned about this from the Gerson program as well. Since Max Gerson, MD figured out his protocol by working with cancer patients in the early 1900's, he has one of the few well researche alternative methods. He found ways to keep the most patients alive for the longest time. The coffee is prepared by placing 3 tablespoons into a quart of distilled or bottled water. Then bring the mix to a boil for 3-5 minutes or until all bubbles have dissipated. Then cover and simmer for 20 minutes. Filter and let cool to room temperature. I use organic coffee and a gold filter, the coffee is ground for drip. It is administered using an enema bucket or bag, and retained for about 12-15 minutes. You can learn to do this as I did. Lay on your right side and when the coffee is in, roll onto your forearms and knees. You can massage your abdomen clockwise gently to help retain. It takes some practice. At the end of the time, release at the toilet. I do not drink coffee and was initially concerned about a caffeine rush. This has not happened to me. I generally feel relaxed and calm afterwards. Some people have felt the caffeine but this seems to be rare. Do it in the morning if this is a problem for you. The Gerson program actually calls for 4-5 per day at 4 hour intervals. I did follow this protocol for 18 months but was able to move to 2x a day within the first year. Now I do one in the morning, sometimes two. It is said to open the bile duct in the liver and speed detoxification. (for more on this check out http://gerson-research.org/ or http://www.gerson.org Latest update May 2001 (first written 8/99) Reduction of tiny chest wall tumors and an end to constipation 10/00/UPDATE 3/01 April 1999 9/04/01 MRI shows the absence of cancer Cancer-FREE since September, 2001 with MRI confirmation LINK to 'Live Strong' (Lance Armstrong Foundation) Written in 1999 just after setting up this website Comment to Gooznews.com by Ann Fonfa December 2005 Whole Life Times, July 2005 MedPageToday.com, June 2008 Letter to Medscape, July 2008 LINK to talk about a Day in the Laboratory (11/07 Ann's talk followed an advocate who spoke about 'tasting' animal chow. Ann has said "animals eat powder and kids eat junk. Not a good comparison, is it"? At the Breast Cancer and Environmental Research Centers 2007 Annual Meeting. Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. 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