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.
Under 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.