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Upcoming Events
Jan 11, 2012:
News from the San Antonio Breast Cancer Symposium; teleconference; 12:00 - 1:15 pm EST; from Living Beyond Breast Cancer
More Information
Feb 8, 2012:
Latest Developments Reported at the 34th Annual San Antonio Breast Cancer Symposium; teleconference; 1:30 - 2:30 pm EST; from CancerCare.org
More Information
Feb 24-26, 2012:
C4YW/Annual Conference for Young Women Affected by Breast Cancer; Hyatt Regency, New Orleans, LA.
More information
March 1-3, 2012
5th Evidence-based Complementary/Alternative Cancer Therapies Conference; Annie Appleseed Project;
Embassy Suites Hotel, 1601 Belvedere Rd., West Palm Beach, FL.
More Information
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It's YOUR turn! What would YOU like to see on the ibcResearch Foundation's web site? Do you have suggestions for changes or improvements? What information about IBC would you like to see on the site that is not already there? During 2012, the web site will undergo some functional and design changes, so now is the time to speak up. Let us hear from you via email: contact the web site editor. 
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Remember Us In Your End of Year Giving
Many people wait until the end of the year to do their annual non-profit giving. Perhaps they want to wait until holiday spending is finished, examine the budget for winter utility needs, or just haven't thought about it in the busyness of day to day living.
We know economic times are tough for many and that includes the non-profit sector as well. The Inflammatory Breast Cancer Research Foundation receives no pharmaceutical or corporate funding and relies solely on individual donations. Administrative costs are kept to a minimum in an effort to direct more than 90% of the funds to the mission and goals. If you believe in the research we've funded and the information and support we provide, you can be a part of that work with your donation. It's thanks to the generosity of people like you that we're able to continue working to change the future of IBC.
Thank you from all of us on the Inflammatory Breast Cancer Research Foundation Board.
To make a donation use: the
ibcRF Cause on Facebook
or the Donations and Fundraising page.
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IBC at the San Antonio Breast Cancer Symposium
Earlier this month Ginny Mason and Carol McWilliams attended the San Antonio Breast Cancer Symposium, representing the Inflammatory Breast Cancer Research Foundation. We'll hold off reporting on the IBC specific items until those materials become available to the public in January.
We do want to report on some pre-conference IBC happenings. Two independent IBC advocates, Kelly Kruger and Valerie Fraser, worked together planning a round table discussion/presentation designed to follow the World IBC Consortium meeting, held on Tuesday morning prior to the official start of the symposium. Researchers, clinicians, and others involved with the World IBC Consortium were gathered to discuss the Consortium's progress since the 2010 conference in France. This time was used to develop plans for the 3rd International IBC Conference to be held in early December 2012 in Philadelphia (more details on that as they become available). At the end of the closed Consortium meeting, advocates were invited to join the group for presentations highlighting the need for collaborative efforts. Various speakers, from both the scientific and lay communities, shared thoughts on the current state of research and education in relation to IBC. A moving video of IBC patients, some currently in treatment, was shown to further personalize the issue.
Scientists and clinicians from a variety of U.S. and international institutions were present for the meeting as well as advocates from IBC non-profits and other breast cancer organizations. Kelly and Valerie put in many hours in preparation for this event and plan for follow-up with those involved.
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INFLAMMATORY BREAST CANCER (IBC) RESEARCH FOUNDATION PASSES 5000 MEMBERS ON FACEBOOK
Did you know the Inflammatory Breast Cancer Research Foundation has an active presence on Facebook? Not just one place but two! There is a Cause page as well as a Fan page. Just recently we topped the 5000 member mark on the Cause page!! This is especially exciting and happened because YOU, our supporters, have encouraged your friends and family to join the Cause!
Admittedly we were a bit slow to join the social networking arena but now that we've 'jumped in' we're finding it to be an excellent tool for education and informing people about the work of our organization. With the click of a button we can share important news with all the Cause members providing education and research information. The Cause page provides a platform for easy on-line donations via Network for Good, an added benefit of the site. Of course we hope that folks will visit our website (http://www.ibcresearch.org) but realize that, for some, the Cause page may be their only connection to the Inflammatory Breast Cancer Research Foundation. Hopefully via Facebook they can connect, find useful information, and perhaps choose to support the Cause of the Inflammatory Breast Cancer Research Foundation.
Find the Cause page:
http://www.causes.com/causes/224383-inflammatory-breast-cancer-ibc-research-foundation
or use this shorter link:
http://tinyurl.com/7ktqo6o
The Fan page is a more recent Facebook addition with about 350 members. A Fan page allows for more interaction between the organization and the users of the page. We try to post something on the Fan page weekly and hope that people will visit there often to see what's been added as well as contribute to the page with questions or comments.
Find the Fan page:
http://www.facebook.com/#!/pages/Inflammatory-Breast-Cancer-IBC-Research-Foundation/446772405646
or use this shorter link:
http://tinyurl.com/cbbw4ke
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DID YOU KNOW?
Your Inflammatory Breast Cancer Research Foundation works quietly behind the scenes.
Since its start in 1999, the Inflammatory Breast Cancer Research Foundation has been hearing about diagnosis and treatment problems for those with inflammatory breast cancer (IBC). Each message or phone call emphasized the need for change but how could a patient advocacy organization go about influencing medical practice? These days patients tend to go straight to the internet when confronted with worrisome symptoms or new medical terms. And of course there are already many physicians who tell their patients to "stay off the internet," so just providing information online didn't seem to be the answer.
There are websites endorsed by physicians and even used by physicians in their day to day practice for screening and treatment information. One such website belongs to the National Comprehensive Cancer Network (NCCN). NCCN is comprised of 21 member institutions across the country. This organization brings together nearly 900 oncology experts for 44 panels to develop the NCCN Clinical Practice Guidelines in Oncology. The recommendations in the NCCN Guidelines are based on clinical trials and experience of the panel members. These Guidelines are a wonderful resource, particularly for community oncologists who may not be able to specialize in a given area of oncology and not able to attend conferences to hear about the latest treatment information. The NCCN Clinical Practice Guidelines for breast cancer were very thorough for standard breast cancers but were not designed to address atypical issues like breast cancer in pregnancy, unusual tumor types, or inflammatory breast cancer. IBC was considered a subset of locally advanced breast cancer and physicians were to use those guidelines when treating the disease. For those of us in the IBC community, this was a frustration as we believe IBC should be recognized as a distinct entity and not just part of the locally advanced breast cancer population.
The NCCN Guidelines are used in offices across the country and are also used in the training of physicians. Being able to educate those physicians in training that IBC is a distinct disease and not just a form of locally advanced breast cancer is necessary if patients are to receive the best care possible.
 In 2005, Executive Director Ginny Mason was invited to participate in a meeting of the Breast Cancer Clinical Guidelines panel while attending the San Antonio Breast Cancer Symposium. It was the perfect time to explore why IBC didn't have its own guideline. While the panel was sensitive to the concerns raised, they felt the locally advanced breast cancer guidelines were adequate for the limited numbers of IBC patients and expressed concern about finding adequate evidence to support IBC specific guidelines. Frustrated but not willing to let things rest, Ginny began talking with breast oncologists and patients about the need for IBC specific guidelines. Through those conversations she learned of some patients who received breast conserving therapy (lumpectomy) following their chemotherapy rather than mastectomy. The locally advanced guidelines indicate lumpectomy is acceptable for patients who have a good response to the neoadjuvant chemotherapy. Unfortunately, three patients receiving this treatment protocol recurred very quickly in the remaining breast tissue following their surgery. When these data were provided to the Breast Cancer Clinical Guidelines panel at the next meeting (2006) they agreed there was a need for specific Clinical Guidelines for the treatment of IBC and began the work of compiling the evidence required for the guideline.
During the 2007 San Antonio Breast Cancer Symposium Dr. Robert Carlson, chair of the Breast Cancer Clinical Guidelines panel, presented a session on updates and changes that would be in the 2008 edition of the Guidelines. One of those, and most important to those of us in the IBC community, was the addition of a new IBC specific guideline. No longer would IBC fall under the heading of locally advanced breast cancer! Earlier in the day Dr. Carlson had shared this information during the panel meeting at the conference and recognized the work of the Inflammatory Breast Cancer Research Foundation in making this happen. It was an exciting day for the IBC community, to receive validation from the broader breast cancer community and to now have a specific guideline that would provide guidance to oncologists treating IBC.
To download a copy of the NCCN Clinical Practice Guidelines in Breast Cancer, go to this page (you will need to register first, there is no cost):
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site
or use this shorter link:
http://tinyurl.com/c4lw3ck
A month or so later, during an NCCN meeting, Dr. Carlson spoke about the new guideline and was quoted as saying, "Any cellulitis of the breast that occurs in a non-gravid, non-lactating woman should be assumed to be inflammatory breast cancer until biopsy proves otherwise." Strong but important words that the IBC community appreciated hearing from such a well respected oncology physician. The Inflammatory Breast Cancer Research Foundation is grateful to Dr. Carlson for his permission to use those powerful words on their website and printed literature. It is our hope that Dr. Carlson's words and the Clinical Practice Guideline for IBC will have lasting impact for those facing a diagnosis of IBC.
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2010 Grant Recipient Dr. Bryan Schneider
Makes Headlines!
by Ginny Mason, Executive Director
 | photo courtesy of Indiana University
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In 2010, Inflammatory Breast Cancer Research Foundation awarded two research grants. One of those grants went to Dr. Bryan P. Schneider of Indiana University's Melvin and Bren Simon Cancer Center. Dr. Schneider and his lab colleagues have had some delays in starting the project, due to lack of adequate fresh frozen tissue samples for study, so we're unable to report on their triple negative inflammatory breast cancer research just yet. In the meantime, Dr. Schneider is making headlines and receiving awards for other areas of his work.
The Conquer Cancer Foundation of the American Society of Clinical Oncology (ASCO) named Dr. Schneider as the recipient of the 2011 Advanced Clinical Research Award in Breast Cancer. The award, which includes a three-year, $450,000 grant, was presented during the Breast Cancer Symposium this past September in San Francisco. Dr. Schneider presented details of the cutting edge research, exploring single nucleotide polymorphisms (SNPs) and intensity differences in taxane-induced neuropathy of individual patients, during the 2011 ASCO Annual Meeting in Chicago. Read more about this award on the ASCO website.
The Indiana University Simon Cancer Center website has a good article about Dr. Schneider and the discovery of this important biomarker for neuropathy caused by taxanes.
Dr. Schneider is also gaining attention in his community. The Indianapolis Star recently ran the story, "Rising Star: Bryan Schneider, cancer researcher," giving a glimpse into the development of his education and career. I had the opportunity to first meet Dr. Schneider during his fourth year when he was working with mentor Dr. George Sledge, Jr. It was clear even then, that Dr. Schneider was developing into that special kind of physician who cares passionately about his patients while remaining dedicated to research that will improve care.
The Inflammatory Breast Cancer Research Foundation is excited to support the work of dedicated, visionary researchers like Dr. Schneider. In a time of limited funds for cancer research it is important to encourage and support those whose work has the potential to translate to patients in a timely manner.
Cancer care is moving more and more in the direction of personalized medicine and the research work of Dr.
Schneider and colleagues will guide treatment for individual patients so they will receive the most benefit from therapy with a minimum of side effects. And isn't that what we all want?
Read the complete article from the Indianapolis Star.
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