Who is the Inflammatory Breast Cancer Research Foundation?

This week, we’re pleased to welcome Ginny Mason, BSN, RN, Executive Director of the Inflammatory Breast Cancer Research Foundation (ibcRF), as our guest blogger. Her entry kicks off a 3-part series she has generously contributed that will occur periodically over the next few months. We know you’ll enjoy and be informed by her writing.

In the late 1990s, a handful of people whose lives had been touched by inflammatory breast cancer (IBC) met online. They gravitated together out of a shared sense that ‘someone’ needed to be a voice to ignite interest in research for IBC if treatment and survival were to improve.

One person, who had lost his wife to the disease, was particularly interested in seeking out researchers who were studying IBC. Others in the email group said they weren’t comfortable in that role but wanted to support his efforts. As the email communications continued, the idea for a non-profit organization took shape. The paperwork was filed and in 1999 the Inflammatory Breast Cancer Research Foundation became official with IRS 501 c3 status.

Inflammatory Breast Cancer Research FoundationUnder the leadership of founder/President, Owen Johnson, the new organization chose research as their primary mission but realized the need for education as well. Most people in the lay and medical communities were unaware of IBC and that needed to change.

With a dedicated Board and a handful of other volunteers, the Inflammatory Breast Cancer Research Foundation set out to be the voice for this atypical form of breast cancer. Over the past 12+ years the grass-roots organization has remained small and focused, counting on all those who have been touched by IBC to become the broader voice in their communities. With no office but the ‘world-wide web’, each volunteer works from their own home doing their part to facilitate research and raise awareness of IBC. Through an extensive website, e-newsletter, email discussion lists and participation in conferences and the broader breast cancer community they have been successful in raising awareness and engaging the research community. In the past few years research grants totalling $285,000 have been awarded through a rigorous review process, to researchers studying IBC. Patient advocates are actively involved in all steps of the grant review process, along with a stellar Medical Advisory Board.

While it is frustrating that IBC is still a clinical diagnosis, defined by the same criteria described by Lee & Tannenbaum in 1924, we are making progress. But it’s not enough. It’s time for a 21st century molecular definition of IBC, a way to definitively diagnose the disease without question so that treatment can begin in a timely fashion.

There is still so much work to be done. In memory of all the amazing people whose lives have been shortened by IBC, we’ll remain focused and be that ‘squeaky wheel’ for IBC.

Click here to read more about Ginny Mason.

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2 Responses to Who is the Inflammatory Breast Cancer Research Foundation?

  1. Jamey Hutchens says:

    I am a out 5 yrs from my diagnosis of stage IV, IBC. I was so shocked at my diagnosis to find out that there wasn’t more research being done for IBC. It is so aggressive that you don’t have recognizable symptoms until it has already progressed so far. I was shocked to learn it was IBC after the pathologist had read it as infiltrating ductile carcinoma. At the time, there wasn’t an IBC patient or survivor to talk to in the town where I live. I went to MD Anderson after 2 1/2 months of treatment at home and that was where I got to know other IBC patients and survivors. I’m so glad there is now a group that pushes for more research on this type of breast cancer. Thank you for all of your hard work!

  2. Ginny Mason says:

    Dear Jamey,
    Thanks for your comments. I’m sorry you’ve been diagnosed with IBC but it sounds like you’ve taken a proactive stance and are getting the care you need. I was frustrated when I couldn’t find others with IBC and it wasn’t until we started the Inflammatory Breast Cancer Research Foundation that I got to know many other facing the disease. My experience as a patient is one of the things that fuels my passion to push for research that improves the outcome for all of us. Hope you visited our website and signed up for the e-newsletter so you can keep up with what’s happening.

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