Focus on IBC Newsletter

Last month the In Our Own Words section of the web site was mentioned. We are pleased to have updated the story Jo Pabon's Mother, and added a new one, Joyce Sward's Daughter. If there are more stories out there about a personal experience with IBC, please contact Carol.ibcrf@gmail.com.

It's all about the RESEARCH! Whether it's discovering new or more effective treatments for IBC, or the differences on a molecular level that make IBC so aggressive. What does the Inflammatory Breast Cancer RESEARCH Foundation do toward that end? Check out this new page with research grants awarded by this foundation to brilliant young researchers. Read their projects and see their photos.

And speaking of research...if you are timid about reading medical research, have we got a new page for you! Hop on over to the Introduction to Research page.

Do you Facebook? So do we!

To those who participated in the recent Pampered Chef fundraiser hosted by Rhonda Mangum in honor of her friend Dawne. It was a great success!

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In August of 1999 when Owen Johnson, founder and President of the Inflammatory Breast Cancer Research Foundation, was filing the paperwork to incorporate this new group and establish it as a 501c3 non-profit with the Internal Revenue Service, none of us expected to still be doing this work twelve years later. I think we dove into this project believing that if we maintained an active presence in the research community facilitating and funding quality research, put the information "out there" to educate about IBC through the website and print media, and worked really hard we would accomplish our mission and goals and there would no longer be a need for our services. Unfortunately.......that's not how the story goes.

We have "maintained an active presence in the research community facilitating and funded quality research". We have "put the information out there to educate about IBC" and we certainly have "worked really hard" to accomplish our mission and goals. Alas, it hasn't been enough, although we have made some progress.

ibc research pin

The Inflammatory Breast Cancer Research Foundation was the first IBC specific organization to offer an educational/informational website and brochure 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 Data Base 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 to 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 been involved in clinical trial development and accrual. Since 2009, in partnership with the Milburn Foundation, the Inflammatory Breast Cancer Research Foundation has awarded three grants supporting important IBC research totaling $135,000. The 2011 awards will be announced in the near future.

Sure, there are days we all want to throw in the towel, resign from our respective volunteer positions with the organization and never think about this dreadful disease again....but we can't. Each newly diagnosed person searching for information, each family member seeking support, and the researcher with a cutting edge idea for IBC who just needs some start-up funds need us to be there......it's for them and all the others that we must remain "committed to finding the cause(s)"

Sorry. With a title like "Happy 12th Anniversary to Us" you were probably expecting cake, balloons, and a cyber-party. Instead you got a glimpse into the world of IBC research and advocacy. It's tough, painful, and frustrating but it's also exciting, interesting, and hopeful. In the memory of all our pathfinders and in honor of all those who continue on the journey, we'll keeping being the squeaky wheel and provide a face to motivate the research community to keep pressing forward.

Join us as we celebrate the accomplishments of the past 12 years, give one another hugs to help with the pain and disappointments, and together continue working toward a day when there is no longer a need for this or any other cancer organization. Thanks for your ongoing support, we can't do it without you.

ERA OF HOPE 2011
Ginny Mason RN, BSN; Executive Director

Era of Hope is the Department of Defense Breast Cancer Research Program Conference. This sixth conference was held August 2-5 at the Orlando World Center Marriott, Orlando, FL. "The Era of Hope conference provides a forum for scientists and clinicians from a variety of disciplines to join breast cancer survivors and advocates to learn about the advances made by Department of Defense (DOD), Defense Health Program, Breast Cancer Research Program (BCRP) awardees; challenge paradigms and push boundaries; and identify innovative, high impact approaches for future research. Recognized as one of the premier breast cancer research conferences in the United States, more than 1,600 BCRP awardees, survivors, and invited speakers were present, fostering an atmosphere for collaborative thinking in the fight against breast cancer."

Investigators funded by the DOD BCRP from fiscal year 2007 through fiscal year 2009 are obligated to attend the 2011 conference and report on their research findings. In honor of their long-standing research in breast cancer, those investigators funded in previous years (FY92 thru FY06) were also invited to submit abstracts for presentation at the conference. Participation by consumer advocates is a hallmark of the BCRP and an integral part of the Era of Hope conference. Breast cancer consumer advocacy organizations were invited to submit abstracts and some were chosen for presentation at this year's conference.

The National Breast Cancer Coalition (NBCC) has played a pivotal role in the development and continued operation of the DOD BCRP and remains actively involved. It was fitting then that this year's conference be dedicated to the memory of M. Carolina Hinestrosa. Carolina died June 21, 2009 from soft tissue sarcoma, a late side effect of the radiation that was used to treat her initial breast cancer, diagnosed in 1994. Carolina cofounded Nueva Vida a support and outreach program for Latinas with breast cancer and later joined NBCC's staff as Executive Vice President. She joined the BCRP Integration Panel (the programmatic review level) and served as Chair in FY04 and FY09. "Carolina will be remembered for her energy, grace, and her tireless, unwavering pursuit of a future free of breast cancer."

As mentioned earlier, a unique feature of this conference is the strong attendance and participation by breast cancer consumer advocates. Advocates who have served as peer reviewers for the DOD BCRP during the previous three years are invited to attend and many served in leadership roles. IBC survivor Pat Haugen is currently serving as Chair of the Integration Panel (IP) of the BCRP. As part of this role she was involved in much of the planning for the conference and presented the 'Survivor's Experience' in the opening session. While the other speakers in the session spoke about incidence and mortality rates of breast cancer, treatment effects and changes in mortality in later stage breast cancer, and new therapeutic approaches for cancer, Pat brought the discussion back to the practical application and experience of the patient. This is the piece that is so often missing in other breast cancer conferences. Following the opening session a number of advocates said scientists expressed concern that the advocates were so "depressing, down, and pessimistic". After hearing that one advocate said, "welcome to our world." The advocates were the ones saying we need new ideas and a shift in thinking because the old ways just aren't working! Interesting that this was seen by some as depressing.

Each day started with a moment of silence when a breast cancer pathfinder was remembered for her advocacy work. Those times were difficult for many of us who knew and miss those courageous advocates. Plenary sessions followed and focused on a variety of topics such as: Success Models; What Can We Learn, which looked at the achievements of the HIV/AIDS movement; Breast Cancer Prevention and Risk; Non-Mutational Causes of Breast Cancer; New Perspectives in Breast Cancer Research; Nano-Nano, Targeting with Small Particles, and a Controversy Session: Setting the Bar. Each plenary session included a survivor speaker, most often the highlight of the session. Robert Schneider PhD, recipient of the Inflammatory Breast Cancer Research Foundation grant in 2010, served as moderator for one of the plenary sessions.

Interspersed throughout the conference were concurrent sessions on a variety of topics. Each concurrent symposia was co-chaired by a scientist and advocate. In 2008 there was an IBC specific symposia and I had the opportunity to co-chair that session but not this year, so I was paired with Dr. Mark Pegram to co-chair a session on BRCA 1 and Triple-Negative Breast Cancer. Topics like Treatment Resistance, Genomic Technologies, Biomarkers, Targeting Signaling Pathways, Site Specific Metastasis Research, and many, many others.

While there wasn't an IBC specific symposia this year there were presentations and posters devoted to the topic. One presentation focused on the modulation of regulatory T cells in immunotherapy and another on therapeutic resistance in IBC cells. The poster sessions featured IBC posters from a collaboration of Wayne State University with Cairo University, three from University of Delaware, Fox Chase Cancer Center, and one from M. D. Anderson Cancer Center. Each poster/presentation corresponded with research that was funded by the DOD BCRP.

Since it is impossible to attend every concurrent session participants had to prioritize the offerings and sometimes move from one symposia to another to catch specific presentations. I was particularly interested in the symposia focusing on metastatic breast cancer, treatment resistance, novel molecular targets, dormancy and recurrence, and therapies that target the immune system. I attended each of these symposia as well as bits of others to hear one or two presentations.

Each day three different lunchtime sessions were offered featuring a scientist and advocate. Silvia Formenti, MD and Maria Wetzel focused on metastatic breast cancer combining clinical treatment information with a candid patient experience. Debbie Laxague and Leslie Bernstein PhD discussed "Breast Cancer Today" including topics of particular interest to both researchers and advocates. Susan Troyan MD and Sherry Goldman talked about breast cancer from a clinical perspective and Laura Nikolaides and Donald Berry PhD looked at the challenges of early detection. Some of these sessions were offered on multiple days. The metastatic breast cancer discussion was particularly moving and brought home the challenges facing those experiencing metastatic disease as well as those trying to provide care.

The Era of Hope conference represents cutting edge research funded by the DOD BCRP, hopefully the "brightest and the best". It's important to remember that much of what is presented there is what's termed "basic science" and unfortunately may never develop into translational research. I began serving as a consumer peer reviewer for the DOD BCRP in 2001, excited and ready to put to use all the science training I'd gathered to help bring meaningful research to patients. I had to wade through huge proposals filled with scientific jargon, charts and graphs, and too often minimal involvement of advocates in the project. As a consumer advocate on the review panel, I was only required to comment on the relevance of the project to breast cancer but you can guess I wasn't content with that, I did my best to rate the science and the scientist as well. Serving as a reviewer has given me opportunities to meet a variety of people in the breast cancer community. As advocates, our place at the table helps remind the scientists that people are living and dying of breast cancer, it's not just a disease injected into a mouse or a cell line. Many have never talked to a survivor and will admit that the experience changes how they view their work in the future. In the past few years I've served as an ad hoc reviewer on the Integration Panel where we take the reviews from the peer review panels and determine which proposals we believe should be considered for funding. It's a daunting task knowing that there are limited funds and you want to choose the proposals that will give the most "bang for the buck". We look for high risk, high benefit knowing some of those will ultimately fail, but just might be the block-buster we are all looking for.

After sitting through long days of presentations and viewing row after row of posters each evening many in the advocate community expressed frustration that we don't seem to be any closer to finding answers to the problem of breast cancer. We're all feeling the need to change the conversation, to look at things from new angles, to shake things up a bit. The old way of doing things doesn't appear to be working but what next? I don't have the answers but want to reassure you, there are many who are looking for a way to move the research process forward more quickly and effectively.

The proceedings include all abstracts. There is a link to download the proceedings on the left side of this linked page. On the same page is an excellent video which explains the Department of Defense Breast Cancer Research Program.

EXPRESSIONS OF HOPE--ASCO 2011-2012 Calendar

The American Society of Clinical Oncology (ASCO) is currently seeking artwork submissions for its annual Expressions of Hope wall calendar. Cancer has a profound effect on all the lives it touches. We invite anyone who has been affected by cancer---patients, friends, families, caregivers-to share their emotions through art and inspire hope in others.

Artwork Specifications

·Artwork for the 2011-2012 calendar must be submitted by August 31, 2011. Artwork submitted after this date will be considered for future calendars.

·Artwork must not have been previously published.

·Artwork may be submitted on paper or canvas any size up to 16" x 20". Horizontal images are encouraged. If you have a non-horizontal image, please note that it will need to be cropped to accommodate the calendar layout.

·If your artwork has already been scanned or photographed or if your artwork was originally electronic, please send your highest-resolution tiff file on a CD along with your artwork.

·Photography submitted will need to be able to accommodate 9 5/8" x 7 1/4" at 300dpi to be included in the 2011-2012 calendar.

·Artwork must be one dimensional. Mediums may include but are not limited to oil, watercolor, charcoals, acrylics, pencil, pen and ink, crayon, etc.

·All artwork will be returned. ASCO cannot be responsible for any damages incurred during shipment.

Visit this page to get the submission form and to view artwork from previous calendars. There is no fee to submit artwork.