Inflammatory Breast Cancer Foundation

About Us

• Board of Directors

• Medical Advisors

• IBCF Events

• 2010 Goals

Remember: Any sudden changes to your breast (sometimes overnight), swelling, constant itching, pain or discoloration need to be taken seriously. See your Doctor.

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 to witness the opening of this ground breaking event.

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.

The Inflammatory Breast Cancer Foundation Board of Directors

Patti Bradfield
President

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
Vice-President

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.

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"

Nancy Key
Director

Nancy is a wife, mother and survivor of IBC since 1998 and shares her stories while advocating for more awareness where ever she goes.

Since 1999, Nancy has been a Co-Facilitator of Bosom Buddies at Evergreen Hospital in Kirkland WA, and also a Patient Family Advisor at this hospital since 2004.

She was the Chairwoman for Relay for Life for the American Cancer Society in 2002, and since 2002 is a Peer Reviewer for the Department of Defense, which is Congressionally Directed by the U.S. Army.

Nancy is also an Advocate in Science training for Susan G. Komen For the Cure 2009.

At the behest of Patti Bradfield in 2006, Nancy made her television debut on KOMO TV in Seattle and again in the KOMO piece "The Silent Killer" in the same year.

Claudia Fauver
Member At Large

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.

In trying to get the word out, Claudia did a newspaper interview at Sunnie Jacob’s request; then she and Sunnie did a video about IBC (now appearing on YouTube). They both appeared on a local radio program hosted by Claudia’s former boss (a financial planner), discussing and answering questions about IBC for an hour. Everywhere she goes, Claudia makes sure that everyone learns about IBC, and that includes her doctors’ appointments and any testing she needs. Even telemarketers have to listen to her before she’ll listen to them. It looks like she’s found something to keep her busy during her retirement.

Heidi Marble
Member at Large

Heidi is a survivor of IBC and has taken this life altering challenge and turned it into a book "Waiting for Wings", television advocating and speaking engagements.

Heidi has had the opportunity to speak in front of thousands of people blending her sense of humor with her message of beating the odds. She has been featured on CBS’s Bay Area Sunday, ABC’s Sacramento and Co. and NBC’s KCRA 3 News. Her story filled the front pages of the Daily Republic and Reporter Newspapers. She was also been featured in Solano Magazine which has a circulation of over 100,000. In addition, she has been featured as an inspirational speaker in over 30 events throughout the Bay area. Heidi also sits on the board of North Bay Medical Center as a patient advocate. Her art work and book have raised thousands of dollars to help people dealing with all types of cancer. Furthermore, phase one of a feature length documentary has been started under the care of famous Hollywood Literary Agent Caren Bohrman.

Heidi writes, cancer is a thief; it took her breasts, her hair, her fertility but it did not take her spirit. She proudly honors her barren chest by having a full length photo on the front cover of her book. By owning her scars she hopes to help broaden the spectrum of beauty. In her words, “Being alive is beautiful.”

Terry Arnold
Member At Large

Terry Arnold was diagnosed with IBC in her right breast in August of 2007 after three months of misdiagnosis. As if an IBC triple negative diagnosis was not enough of a blow, and never one to do things in a small way, she discovered her left breast had traditional cancer as well. In treatment for almost a year, Terry was blessed with so much support by family and friends that she was able to be of support to others with this disease even while still under care. This befriending of other IBC chicks (as she calls them) led to a friendship with Diana House, an IBC patient from across the country. The two survivors made a deal to get through this together and tell everyone possible about IBC. That promise lead to an IBC documentary produced by Matthew Steinhart. The documentary is crafted in a humorous, but informative way to teach about IBC. Outside of being the best wife possible to her husband Calvin of 28 years and mother, mother in law and grandmother, she is focused on educating every person to learn more about IBC, its symptoms and best treatment plans. She looks forward to the day we can all remember than once, long ago, there was a disease called IBC that is now filed under an archive of past diseases because we have a cure. Hope always.

Kelly Kruger
Member at Large

Kelly Kruger learned first hand that even large comprehensive cancer clinics with dedicated breast centers can mistakenly diagnose IBC and it became clear she needed to become her own best advocate in her own battle with the most deadly form of breast cancer. She also knew at that point, if given the chance, she wanted to become an advocate for IBC. Now a 3 year survivor of Inflammatory Breast Cancer, it is Kelly's hope that she will be able to bring fresh ideas and maybe some new perspectives to the Inflammatory Breast Cancer Foundation that will help in their efforts to increase awareness, especially within the medical community.

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 Co-Director of the Morgan Welch Inflammatory Breast Cancer Program and Clinic The Nellie B. Connally Breast Center M.D. Anderson Cancer Center, Houston Texas
	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. 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
	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

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.

IBCF EVENTS

New York October 2008. Branton Woods Golf Club hosted this years IBCF Fundraiser The IBCF board members present for Doug Jenks Memorial Golf tournament, in honor and memory of his late wife Patti, was a tribute to the many friends who support Doug, his family and the foundations efforts. Pictured from left to right at Bratton Woods are: Doug Jenks, Sunnie Jacobs, Jenee Bobbora, Patti Bradfield.

Chicago October 2008 Our VP Mare Kirschenbaum at Wheeling IL, Health Fair, spreading the word.

Seattle October 2008 Kathryn Gordon, our special IBCF supporter and 8 year IBC survivor, helps with the information table at the University of Washington Open House for the Tumor Vaccine Group.

Please visit the Tumor Vacine Groups website to learn more about what they are accomplishing. Click here to see this amazing group of dedicated professionals.

Seattle October 2008

The Pacific Northwest Chapter of the National Lupus Foundation invited the IBCF to host a table at their yearly rally.

Patti Bradfield held down the 'fort' at the old Sandpoint Naval Air Station, hanger # 1.

2010 Goals

Barbara Harttraft worked hard to get the State of New Jersey on board with IBC Advocacy, and she succeeded. The below PDF file can be printed out and each and every state in the United States can and should have the same document.

What Barbara started with such a big step, we can take this one step beyond General Practice Physicians, and have each state send the same document to Surgeons, (both plastic and general); OB/GYN's; etc.

There is no limit to how this can be a document of education for all physicians.

This is just one goal for 2010, and in Barbara Harttraft's memory, there will be more!

Click to read and print:
A SPECIAL RESEARCH REPORT OF THE NEW JERSEY
COMMISSION ON CANCER RESEARCH