Advocacy in Action: Inflammatory Breast Cancer Research Foundation
Advocacy in Action sat down with Ginny Mason to learn more about the Inflammatory Breast Cancer Research Foundation and the work they do to help those with inflammatory breast cancer through both education and research.
Advocacy in Action videos at the American Association for Cancer Research (AACR) Annual Meeting 2012 was made possible, in part, by:
VIDEO TRANSCRIPT
Selma Schimmel, Founder & CEO, Vital Options International
This is Selma Schimmel in Chicago at the AACR annual meeting, the American Association for Cancer Research bringing you Advocacy in Action special, with our advocate in action, Ginny Mason, Executive Director of the Inflammatory Breast Cancer Research Foundation. It’s great to see you again, Ginny.
Ginny Mason, RN, Executive Director, Inflammatory Breast Cancer Research Foundation
Thank you, Selma.
Selma Schimmel:
Well you are certainly one of the leaders and really a pioneering force in the area of your expertise which is inflammatory breast cancer. So we really want to talk to you about your organization, what sets inflammatory breast cancer apart and what are some of the unique needs and issues these patients face.
Ginny Mason, RN:
When my organization – and I call it mine, but I didn’t officially start the organization. It was started in 1999 by a gentleman by the name of Owen Johnson after the death of his wife to inflammatory breast cancer. And his frustration at how little information was out there about the disease and when she began to go through treatment after treatment without a good response, started looking for research and it was non-existent. And so after her passing he decided that somebody needed to do something, and he had the ability to turn his business to his two step-sons, printed business cards with his name and said ‘inflammatory breast cancer research advocate’ and did a pub-net search to find out who might be working on the disease and went knocking on doors, something that 13 years ago was unheard of; advocates weren’t doing those kinds of things.
Selma Schimmel:
And now let’s talk about your work with the Inflammatory Breast Cancer Research Foundation.
Ginny Mason, RN:
Primarily we’re a research organization as our name states – Inflammatory Breast Cancer Research Foundation – but we try to tie in at all points in that education, not only the lay community but the medical community as well.
Selma Schimmel:
What happens when a patient – a loved one, family member, whomever – calls the Foundation for support? Who do they speak to, talk to us about that.
Ginny Mason, RN:
We have a group of trained advocates, most of them are survivors, one is not but most of them are survivors who have been given some specialized training on how to work with one who is newly diagnosed or those who have questions. We get calls – we have a toll-free number – we get calls and we also have a form that people can contact us via the web.
We try to give guidance, we make it very clear we’re not giving medical advice, we’re not physicians, we’re patients and people who care about the disease; we use a disclaimer, be very careful about those kinds of things; try to help direct people to what their options are, maybe for treatment where they might seek treatment if their physician isn’t familiar with the disease. We answer a real variety of questions.
Selma Schimmel:
Ginny, I get to see you a few times a year at these different conferences. I always find you to be energetic, passionate, articulate, and a real pleasure to talk to. You’re smart and committed; you taught us a lot today.
Ginny Mason, RN:
Thank you. I continue to learn and feel like…I hoped we would be at a point by now after 13 years when there would be no need for our organization but I’m committed to it as long as I’m on this side of the grass, by continuing to do well. I’ll keep at it till we don’t, when I can go spend time with my grandchildren.
Selma Schimmel:
I hear that. Thank you, Ginny Mason, Executive Director of Inflammatory Breast Cancer Research Foundation. Thank you, Ginny.
Ginny Mason, RN:
Thank you.
END OF VIDEO