As you likely already know, the Inflammatory Breast Cancer Research Foundation has been awarding research grants since 2009.  Thanks to our generous donors and generous financial gifts from the Milburn Foundation we've been able to award nearly $300,000 to support quality IBC research.  As you've read about the various grants in the newsletter did you wonder how those grant recipients were chosen?

Back in the early days of the organization some modest grants were given to various researchers/projects on an "as needed" basis.  Some of those projects included providing funds to cover research on three women all diagnosed with IBC while working in the same office, money for a novel metabolomics study of IBC, as well as financial and staffing resources to support a beginning registry of IBC patients.  It was exciting to be facilitating research but we soon realized we couldn't help everyone who came asking for assistance with their project.   

Members of our Medical Advisory Board suggested that we choose the common, competitive scientific model for supporting research.  This was a new arena for the Foundation but after some consulting and research we decided to follow their advice.  When adequate funds were available the Board, in consultation with the Medical Advisory Board, decided to make our first "official" grant.  An RFA (Request for Applications) was drafted which included the focus of the research and the specifics of the grant, and dates for submission.  While groups like the National Institutes of Health put out broad invitations to the research community for the submission of applications, we limited our invitation to researchers who had a specific interest in the study of IBC. 

Once the invitation and RFA go out, the wait begins....how many people will respond and send an application?  Typically we invite 20-30 researchers.  Most applications are received as the cut-off date nears and are submitted electronically.  The application consists of no more than 5 pages describing the proposed research and budget, a one page lay summary and CV of the applicant.  Once these materials are received they go to each of the Medical Advisory Board members and each of the Inflammatory Breast Cancer Research Foundation Board members. Over the next 6-8 weeks they read through the proposals and associated materials and decide which ones best reflect the focus of the grant, are backed by good scientific principles, have the potential to benefit patients, and can actually be accomplished by the principal investigator. Each reviewer ranks the applications, with #1 being the one recommended for funding, and indicates reasons for the ranking.  Once all those reviews are received the IBC Research Foundation Board reviews all the information and after extensive discussion comes to a decision on the grant recipient.

One year there were two proposals that both received high rankings and we decided to fund two projects rather than just one.  Fortunately we had adequate funds to expand the grants that year but that's not always the case, especially in these tight financial times.

Once a grant recipient is chosen, all applicants are notified.  The recipient receives an agreement letter stating the terms of the grant.  Typically the recipient receives one-half of the funds up front and agrees to submit regular reports, in both scientific and lay language, at 3 months, 6 months and 1 year. Most projects are geared to 1 year but extensions can be given as needed.  The agreement letter usually has to go through the recipient's institutional grants office before the agreement is finalized.  After the agreement letter is received the Foundation moves forward with a public announcement of the grant award and the first half of the funds are released to the recipient.

While this sounds like the end of a long process, it is actually the beginning of the second phase. We've learned that laboratory research is complicated and time consuming. Things often don't go as planned, there are setbacks and delays beyond the control of the researcher.  Even though the recipient accomplishes the stated goals of the research project it is often 1-2 years or more before that research is presented or published.  Because of this time lag, it's important to understand the IBC Research Foundation may not be able to share research results for funded research for quite some time.

In a society that's become accustomed to instant replays, Twitter sound-bites, and 24/7 access via cell phones we want those research results NOW!  Unfortunately that's not how the system works and while we certainly do our best to keep nudging and encouraging those involved, we just have to wait for the science.

Now you know the process used by the IBC Research Foundation for funding grants. It's thanks to your financial support that we've been able to keep funding important, quality IBC research. YOU are making a difference for those facing this disease..........thank you!

Research lab photo courtesy of the National Cancer Institute, and photographer Bill Branson. 

[Editor's note: if this newsletter, or the ibcRF web site, or the toll-free phone line, or the online form query have helped you, or a family member, why not make a donation?]

Vera Mendes-Kramer, BA, MA, a student in the Pathologist Assistant program at Wayne State University in Detroit, Michigan, presented a poster at the American Association of Pathologists' Assistants 39th Annual Conference held September 21-27 in Portland Oregon.     

Vera Mendes-Kramer (left) discusses her poster with an attendee.

Ms. Mendes-Kramer's poster was titled "Inflammatory Breast Cancer: a Case Report & Review of the Literature." We asked her about her interest in IBC:

"I first learned of Inflammatory breast cancer when a family member was diagnosed with the condition. My aunt had always had bad reactions to bug bites, so when she first presented with an erythematous and edematous breast she thought it was a reaction to a bite.  She waited a few weeks before seeing her doctor.  At the time of diagnosis my aunt's clinical presentation was already quite advanced.  She had all the typical symptoms: the peau d'orange, the edematous breast, the retracted nipple. Unfortunately, my aunt lived in Europe at the time and under socialized medicine she had to wait several weeks for an appointment with an oncologist to begin treatment. She passed away shortly thereafter.

I had, of course, learned about breast cancer, but the insidiousness of this particular type was completely foreign to me.  As a pathologist assistant student I have become familiar with IBC, as well as with the gross presentation of a breast specimen that is affected with the condition, but it is evident that there isn't much public awareness about this condition, which was the reason I decided to submit my poster on this particular topic.   I hope that the information I presented will some day make a difference in someone's life." 

[Editor's note: a second IBC poster was also presented at this conference, "Inflammatory Breast Carcinoma with an unusual E-cadherin and p120 Catenin Staining Pattern by Hannah Hochrein from West Virginia University, another pathologists' assistant student.] 

In 1998 a friend was diagnosed with IBC. Amid the horror of believing she would die (thankfully she did not), we both looked for whatever information on this disease we could find. She went to the internet and I went to my mother's nursing books. We found the scholarly information woefully lacking but did find a support group online.

At the same time, Owen and Marilyn Johnson were dealing with the advancement of her IBC disease, and then Marilyn died in September 1998.  From the spark of her death a fire was lit. Through the online support group, a circle of people coalesced around Owen Johnson and the very first IBC foundation was created--one that supported both research and advocacy. The first board meeting took place in a member's dining room and included a rubber chicken and people wandering around in pajamas and drinking coffee. Among the silliness, the fire lit the room and the Inflammatory Breast Cancer Research Foundation was born.  The mission was to find a cause, facilitate research and provide a platform for advocacy and education. A 501(c)3 was applied for and received from the IRS.  
 

Owen Johnson and Debbie McKinney

Because the foundation has no formal office, we met each other piecemeal. Ginny Mason, a newly graduated BS in nursing, met Owen Johnson in Alaska while Ginny and her husband were on vacation. Marilyn Kirschenbaum, Lee Smith and RK VanOrsdal met on a Christmas jaunt in Ottawa and ended up designing the first brochure. Owen Johnson, Ginny Mason, Gayla Little, Becky Rosen, Debbie McKinney, and Bee Johnson (Owen's mother) met at either ASCO, NBCC, or the San Antonio Breast Cancer Symposium.

Read the rest of the story here.