Inflammatory Breast Cancer Foundation Education and Awareness

About Us

• Board of Directors

• Medical Advisors

The Inflammatory Breast Cancer Foundation is a group of concerned citizens who came together with the hope of making a difference in the way Inflammatory Breast Cancer ( IBC ) is perceived by both the general public and the medical community.

Our ranks come from IBC patients, Physicians, the Media and those affected by IBC.

Advocates and patients came from such places as Idaho, Washington State, Illinois and London England in 2006 at the opening of the first IBC Clinic in Houston Texas. This picture is hanging in the clinic as testament to the advocates and doctors who had a vision that culminated in this first of its kind facility at MD Anderson Cancer Center.

Our mission is to change the perceived notion that all breast cancers have a lump. The medical community has not been educated to a degree where they can catch this deadly form of breast cancer earlier than stage IIIB. This is not acceptable.

We will do a national canvas of medical continuing education seminars, radio shows, television, in person interviews and reach as many people as possible to spread the word there is more than one type of breast cancer, and that IBC can be deadly if not diagnosed properly. Countless women are fighting their own health care physicians to get a proper diagnosis, which has to stop. Through education and awareness, this can change.

Among our supporters are men and women who have lost wives, sisters, mothers and daughters. We all know that regular breast cancer has been researched and many good things have come from what other grass roots organization's have done. We all know what the Pink Ribbon stands for, that women and men should look for a lump.

Now we need to educate with every medium that is earthly possible that there is a breast cancer that we have not been told about.

And we will.

Getting to know us

Why we do what we do for you

Some of the things I do to promote awareness of IBC such as attend as many BC functions, walks, health fairs as I can to hand out brochures and talk to people about IBC....I want to add that much of the time Vince, my Life Partner and the rock that has supported me thru all this goes with me and walks around in the other direction dong the same. I also hand out brochures and talk to just about everyone that will listen(standing in lines for whatever,when purchasing in a store I hand a brochure to the clerk, I leave a brochure with my receipt in restaurants, etc. Why do I do this? Because I remember the devastation I felt...when I heard these words on Dec 20, 2005 .."You have Inflammatory Breast Cancer, there is no time for a second opinion...there is no time for anything..we have to get you into treatment immediately to save your life...that is if ANYTHING will!" I , of course, like most had never heard of IBC. I do this also and especially because I am so tired of hearing the many stories of young women dying because they were subjected to delayed and/or misdiagnosis. I am happy to report that at the latest ACS WALK , I received more "yes, I HAVE heard of this than ever before( some said I got i from you last year..but others said they saw it on tv or the internet...so we ARE making a difference!)

Sunnie is one of our BRAVE, STRONG voices!

I do have a life aside from IBC such as I took up a hobby of making beaded jewelry, which I got a bit carried away with and since I only have one neck and it is a very expensive hobby,at the urging of friends, I decided to try to sell some (a % of which goes to IBCF). Vince and I also volunteer one day a week At the Lynn Cancer Center in Hemotology-Oncology Dept working with Patients & Doctors. Sometimes people ask why we do this and don't we find it depressing....far from it..it is very gratifying and we find that we get much more from the attitude and courage of most of these patient than we give. I've recently been asked to take on the training of new volunteers in this dept (unfortunately an extremely busy one..sometimes over 200 patients in a day). which I'm happy to do. I also like to play maj jong and cards . I love to play golf( although some would not consider me a true golfer, but who cares...I enjoy it!)I am also a very proud grandmother of 5.. they make the sun shine... Vince has 4 so together we have 9. We don't get to see them as much as we like, but love the phone calls and SKYPE. I love being busy and am determined to make my life take charge of the cancer rather than the other way around. After all, cancer does NOT define us!

The Inflammatory Breast Cancer Foundation Board of Directors

Alan Stephens
President

Alan is a Real Estate broker and builder, and a Michigan State delegate from his district.

Alan is also the husband of Peggy Stephens, IBC survivor and has become a staunch advocate and public speaker on behalf of IBC and the IBC Foundation. Alan stays politically active in his home state of Michigan.

Claudia Fauver
Vice President

Claudia, a 67 year old wife (to Mike), mother of 2 and grandmother of 5, was diagnosed with IBC in August 2007. After chemo, a right MRM and radiation treatments, in August 2008 she was declared NED (no evidence of disease or "no expiration date" as she prefers to say). Her experience in getting her diagnosis and treatment showed her that the local medical profession, as well as the general population. needed more education about the signs, symptoms and treatment of IBC.

Jenee Bobbora
Director

Jenee was only 32 and her little girl had just turned 2 when IBC struck without warning. But this former teacher has become a valiant spokesperson for this disease and as she says, "It's my passion to educate people about IBC because it is a little known disease which requires early detection. Our foundation was born out of a large number of forces coming from all different directions. All for the same reason.

So much has been accomplished in a short time. Lives have been saved and projects have been put in motion that will lead us to a cure for IBC. The collaboration of dedicated people from around the globe has proven to be unstoppable.

Peggy Stephens
Secretary

Peggy was diagnosed with IBC in April 2007, after being misdiagnosed for 6 weeks. She is a wife (married to Alan), mother (of 2 wonderful children Samantha & Jack), step-mother (of Jessica), friend, sister, colleague and more. She started the first “IBC Get Together” in Michigan, was instrumental in getting the Michigan IBC Proclamation passed for October, and has been a continual advocate for IBC.

She has recently started fundraising through Caring Baskets by Design, whose goal is for every IBC patient to receive a gift basket to ease their treatment journey. A portion of the proceeds of the sales goes to the IBC Foundation and breast cancer research.

Peggy was recently interviewed by her local television station which you can watch HERE.

Doug Jenks
Treasurer

In 2001, Doug's beloved wife, Patricia, was diagnosed with Inflammatory Breast Cancer. After a long, brave fight, she lost her battle to the disease on January 1, 2005.

Mr. Jenks is very focused on raising awareness of IBC and helping other IBC survivors and their spouses and loved ones.

As the Treasurer of the foundation, Mr. Jenks devotes significant time raising funds and developing programs to support the IBC Foundation with its mission.

Sunnie Jacobs
Director

Sunnie was diagnosed with IBC in December of 2005. With her diagnosis she realized the lack of knowledge in the general community, and has been a driving force for her State of Florida to have an IBC Proclamation designated.

Sunnie, a survivor and adamant advocate, has made it her mission to spread the word where ever she goes. She has been interviewed both in newspapers and television, making sure everyone is educated about the signs and symptoms of IBC and was also the instigator of the New York state proclamations for IBC Awareness. Sunnie is a volunteer for the American Cancer Society and Susan G. Komen, spreading the word about IBC through them and their events, plus a volunteer at the Lynn Cancer Center in Boca Raton, FL

Sunnie and Claudia Fauver are now on YouTube advocating for better awareness.

Jacqueline Miller
Director

Jacqueline has been an advocate speaker of breast cancer issues for over eight years, but with the loss of her dear friend in January of 2008, and a promise to her friend, Inflammatory Breast Cancer education brought a new passion to her life.

"It was only God that directed me to the IBC Foundation website. People, women and men have never heard of this insidious disease. I believe more should be said and done to spread the word about IBC. I've always just been local, speaking at churches, word of mouth, but the public, the media, newspapers', magazines, radio stations, television stations, all medical staff and our government should be MORE involved. It is unacceptable that more is not known"

Patti Bradfield
Chief Educational Officer

Patti's only daughter Tina was diagnosed with Inflammatory Breast Cancer in 2003, which had already metastasized to her liver. Tina pleaded with her mother to write about this under reported and overly misdiagnosed type of breast cancer. Not finding anyone who was willing to take her writings, (for fear of scaring the public), she turned to television. When she met the staff KOMO TV in Seattle Washington, she found a physical voice and a way to get the message to the masses.

On August 29, 2007 Patti lost her beloved daughter, Kristine "Tina" Turck.

"Knowledge is Power" says Patti, is the only way we can win this war" The battle of education in the public arena as well as the medical community is not over, and will not be until not one more woman is 'surprised' by a diagnosis of Inflammatory Breast Cancer.

Marilyn "Mare" Kirschenbaum
Volunteer

Mare began the IBC Journey in 1997, when her daughter Karen was diagnosed with this insidious disease. Fortunately she continues to do remarkably well!

Her first attempt at spreading the word was when she wrote to NBC5 in Chicago and their response was the first television segment on IBC on the ten o'clock news.

Mare has been and continues to be our cheerleader, staying on top of news, advocate issues, and is a graduate of Project Lead.

Rich Smith
Volunteer

Rich served in the Army in '67 and 68. He worked as an administrative associate and then as a project coordinator for Rockwell Automation's New York office. for 28 years. At the same time he was working as an Emergency Medical Technician in Passaic County, NJ (not volunteer). He was an intake coordinator at a hospice company as well as a hospice volunteer.

Married 30 years before losing Doracina to IBC, Rich proudly says, "our son, Roger, works as the Head of Preservation Department at the University of California San Diego. He is married and I am very proud of both him and his wife, Beverly."

Kathy Patton
Volunteer

Kathy began her Inflammatory Breast Cancer (IBC) Journey on December 8, 2005. This was her second primary breast cancer, in the same breast, within an almost six year period. Her first breast cancer was diagnosed on February 1, 2000 as non-invasive Ductal Carcinoma Insitu (DCIS), Stage 0. Due to some complications, she had a stereotactic biopsy along with three lumpectomies, 33 radiation treatments, and was prescribed an anti-estrogen drug called Tamoxifen, which she took orally on a daily basis. Due to severe side effects from the Tamoxifen, her oncologist took her off the drug within six weeks. Kathy was two months shy of being considered cancer-free since her first diagnosis of non-invasive DCIS in 2000, when her IBC symptoms literally occurred overnight; waking up the following morning with all visible textbook symptoms of IBC; not cognizant of what she was dealing with at that point in time. Shortly after that point, she returned to her original oncologist and once she took a look at Kathy's symptoms, she ordered an immediate biopsy the following morning, and from that point on, everything moved very quickly.

In an attempt to get the word out regarding this most aggressive and lethal form of breast cancer, Kathy informs everyone she meets, including men, and the telemarketers that call her home. She was also interviewed by the reporter from The Burlington County Times, Courier Times and The Intelligencer; all located in the Bucks County, Pennsylvania area. It is her passion to inform as many people as possible. She feels strongly and is so dedicated to getting the word out; to tell people this is your life and by doing in-depth research or having someone close to you do it for you, since you very well may be in shock after hearing your diagnosis; can possibly save your life and the lives of many others. EDUCATION IS POWER!!!

Kathy believes any person diagnosed with IBC is presented with a forever life-changing challenge, and considers it a "NEW NORMAL" way of life. She feels if a person is fortunate enough to obtain excellent healthcare coverage when diagnosed, it is imperative to seek medical advice from a top-notch doctor at a top-notch facility. She also believes acceptance, being tenacious, having a strong constitution, and a strong FAITH is what definitely is needed to battle this insidious disease.

Brian Bradfield
Volunteer

Brian has first hand knowledge of IBC, because of his step-daughter Tina, who passed away after a 4 year battle with the disease. He is adamant in relating how aggressive and misdiagnosed IBC is, and has helped his wife Patti Bradfield with her continuing efforts at education before and after the formation of this foundation. Brian is retired from the Royal New Zealand Navy after 20 years, and now works for King County Metro in Seattle WA.

Medical Advisors

	Dr. Massimo Cristofanilli Appointed to Chairman of the Department of Medical Oncology at Fox Chase Cancer Center in Philadelphia Previously Co-Director of the Morgan Welch Inflammatory Breast Cancer Program and Clinic at The Nellie B. Connally Breast Center M.D. Anderson Cancer Center, Houston Texas
	Dr. Tom Buchholz Executive Director Morgan Welch Inflammatory Breast Cancer Program and Clinic Division Head ad interim, Division of Radiation Oncology Professor and Department Chair, Department of Radiation Oncology MD Anderson Cancer Center
	Dr. Paul Levine Research Professor in the Department of Epidemiology and Biostatistics and Clinical Professor of Medicine at the GW Medical Center.
	Dr. Sandra Swain Medical Director, Washington Cancer Institute Washington Hospital Center Washington, D.C. Dr. Swain has an international reputation as a leading authority both in the emergent field of inflammatory breast cancer treatment and in the treatment of early breast cancer.
	Dr. Lupe G. Salazar Assistant Professor of Medicine Tumor Vaccine Group Division of Oncology University of Washington
	Dr. Beth Overmoyer MD, FACP Assistant Professor of Medicine Breast Oncology Dana Farber Cancer Institute Boston, MA
	Dr. Kathleen T. Ruddy Founder and President Breast Health & Healing Foundation Dr. Ruddy is a breast cancer surgeon and international healthcare leader whose interests include the primary prevention of breast cancer, the human mammary tumor virus, and the polyvalent preventive breast cancer vaccine.
	Dr. Fredika Robertson Professor - Inflammatory Breast Cancer Translational Research Laboratory The University of Texas MD Anderson Cancer Center
	Dr. Kenneth Van Golen Associate Professor of Biological Science and The Center for Translational Cancer Research Senior Research Scientist Helen F. Graham Cancer Center
	Dr. Naoto Ueno Executive Director of the Morgan Welch Inflammatory Breast Cancer Research Program and Clinic The University of Texas MD Anderson Cancer Center. Tenured Professor, Department of Breast Medical Oncology Division of Cancer Medicine, and a practicing physician-scientist with experience conducting both targeted and gene therapy clinical trials in patients.
	Dr. Gabriel N. Hortobagyi Professor of Medicine Nellie B. Connally Chair in Breast Cancer Chairman, Department of Breast Medical Oncology Director, Multidisciplinary Breast Cancer Research Program The Nellie B. Connally Breast Center M.D. Anderson Cancer Center, Houston Texas

This page would not be complete without our friends from KOMO TV/Fisher Communications in Seattle Washington. Jon Knorr KOMO camerman and Michelle Esteban reporter, pictured below, have followed the progress of our educational message from the beginning.

Although not on our board of directors, we honor them for all the diligent work they have done.

Michelle, thank you is not enough for the light you have shown into the dark tunnel of Inflammatory Breast Cancer. Your awards are testament to your devoted coverage of this devastating disease.

Jon, thank you for being sensitive to the many women you have photographed. We honor you for taking this subject, through your work, and bringing reality to a very difficult subject.