Inflammatory Breast Cancer Foundation Education and Awareness

A Survivor's Mission

I am delighted to have taken the post of President of EraseIBC because educating people about this disease is a passion for me. I co-founded this organization with Patti Bradfield and Dr. Cristofanilli in 2007 to make a difference and I believe we are succeeding , but we want to do more. I was diagnosed 10 years ago in March 2003 when my daughter was just a baby. I was blessed with outstanding treatment after being misdiagnosed with having “a strange reaction to the birth control pill” when in fact I had IBC at age 32.

Its my honor to follow in Patti Bradfield’s footsteps as president and try to continue to move this foundation forward toward a future where all women will be aware of the symptoms of IBC and all doctors will know how to treat it properly or will have enough understanding of the seriousness of this disease to send women to see a specialist at a comprehensive cancer hospital.

We are a 100% volunteer organization and we are always looking for volunteers. Please consider filling out the Volunteer form that can be found at the top of our web site.

Jenee J. Bobbora, President

The Road We Travel
by Patti Bradfield 2012

On August 29, 2007 at exactly 3:05 a.m. my beautiful daughter Tina died. My life, as you can imagine, turned upside down. That was almost five years ago. The reality of her passing hit my heart first, but my brain could not conceive the reality until later. I say that because I continued my (what I would call) a rampage of awareness campaigns about Inflammatory Breast Cancer, because it was the only thing that kept my mind working. Just three months prior to Tina's passing, Dr. Massimo Cristofanilli, Jenee Bobbora and myself, started this foundation, with the hope we could make a difference in the way this disease was perceived by the public and the medical community. We started on a course of education on May 25th, 2007, and have not veered from that to this day.

Like my daughter, there are hundreds of women I have come in contact with who are fighting their own doctors to get diagnosed. Diagnosed with whatever is going on within their bodies that they know is not normal, but fight they do until they either are diagnosed with IBC, or have IBC ruled out. Many, too many to count, are not with us anymore. Many of those did not have to die. If they had been diagnosed when they first went to their primary care doctors or OBGYN physicians, (and sadly many Oncologists) they 'might' still be with us. So I have to ask, "How far have we come" since September of 2003 when I first started my own personal crusade to alert women about this breast cancer that was misdiagnosed or mistreated from it's very earliest stages.

At this writing, we can say with certainty that there are IBC specific clinics which have opened; there are IBC specific doctors who have dedicated their careers to finding the science and possibly the treatments to stop (dare I say possibly) or cure IBC. There is now a world conglomerate of physicians and scientists who have come together to study and treat this disease, the next meeting will be on Dec 1st and 2nd; There are Continuing Educational courses on IBC; There are new treatment protocols and vaccines for women who are in the thick of the battle against this deadly form of breast cancer; There are scientists who work daily on finding the root cause of IBC, but at this writing this 'root' is still elusive and controversial.

Social Security finally put IBC into their compassionate allowance status, but as of this writing many Social Security Disability adjudicators are not familiar with the many IBC patients who will be in some type of chemotherapy for life, and don't totally understand IBC. We, our foundation, is working on changing this misunderstood part of their ruling.

Our foundation has pushed ahead, sometimes too slow for this writer, trying to get a foothold into the bigger institutions to scream the message that mammograms are not the answer. And we will continue through our educational material which we give away at no charge; through our radio show, IBC Fact & Fallacies, now in it's third year, where we interview the doctors and researchers who are the most knowledgeable about IBC; we talk to large groups and all of us try to talk over the top of the bigger groups that mammograms are not the end all, when it comes to this disease.

But, we can not do this alone. We badly need more people to join our team of non-paid volunteers to spread critically needed education before any science can be achieved. Without education and public awareness, science can only do so much. For if we cannot get doctors to realize that this disease, Inflammatory Breast Cancer, is in a class all by itself; needs immediate diagnosis and quicker turnaround from diagnosis to treatment, our vitriolic speeches are going to be useless. The more people that can join our cause and help with the education, the more lives we can save. It is that simple.

Will you please join us, in any capacity you might feel is helpful, to push the message forward, at a quicker rate! We need you, just like Uncle Sam used to say during the two world wars, as the educational crevasse between life and death when it comes to IBC, is still vast. We need you!