The month was August of 1999.....Owen Johnson, founder of the Inflammatory Breast Cancer Research Foundation, was filing the paperwork to incorporate this new group as a 501c3 non-profit with the Internal Revenue Service.
We became a "squeaky wheel" in the research community facilitating and funding quality research, educating and raising awareness about IBC in the medical community and public. We expected to accomplish our mission and goals and close up shop within a couple of years. Much has been learned about the complex nature of IBC, but the job is not over yet.
We have been such "a squeaky wheel in the research community," that researchers expect to see someone from ibcRF at their conference sessions or posters ready with questions!
Did you know that the Inflammatory Breast Cancer Research Foundation was the first IBC specific organization to offer an
educational/informational website, brochure, and bookmark as well as a toll-free number providing access to one-on-one peer support.
In response to needs expressed by the scientific community we established an advocacy owned and operated Inflammatory Breast Cancer Research Foundation
BioBank and Clinical Database to provide a robust research tool for those wanting to study human IBC tissue, allowing any IBC patient the opportunity to be involved in meaningful IBC research.
Our organization was instrumental in the development and publication of the NCCN (National Comprehensive Cancer Network)
Breast Cancer Treatment Guideline specific for IBC, providing guidance to treating physicians and used in the training of oncologists. We've also been involved in the updating of the NCCN Breast Cancer Screening and Diagnosis Guidelines to address the symptoms of IBC more clearly and aid physicians and patients in appropriate evaluation.
Over the years the Inflammatory Breast Cancer Research Foundation has provided modest, informal
grants to support specific IBC projects and has been involved in clinical trial development and accrual. Since 2009, in partnership with the Milburn Foundation and individually, the Inflammatory Breast Cancer Research Foundation has awarded grants supporting nearly $250,000 of important IBC research, with more to come!
Do we get discouraged? Sure, there are days we never want to think about this dreadful disease again. But with each newly diagnosed IBCer searching for
up-to-date accurate information online, each patient or family member
seeking emotional support, each researcher with a cutting edge idea for IBC who just needs some start-up funds need us to be there, we are reminded of our mission. It's because of these people and all the others to come that we must remain "committed to finding the cause(s)."
Join us in this important venture. In the memory of all our pathfinders and in honor of all those who continue on the journey, we'll keep being the squeaky wheel. We will provide a face to IBC researchers, and some funds to motivate the IBC research community to keep pressing forward.
Thanks for
your ongoing support, we can't keep going and making progress without YOU!