Focus on IBC

September 2012    

 

The newsletter from the Inflammatory Breast Cancer Research Foundation 

Upcoming Events 

 

September 7, 2012

Cancer Rights Conference; Marriott O'Hare, Chicago, IL; 

More Information  

 

September 11, 2012  

Beyond Treatment: Understanding Your New Normal; Teleconference;   

More Information 

 

September 13-15, 2012

ASCO Breast Cancer Symposium; San Francisco, CA.

More Information 

 

September 14-14, 2012

Evidence-Based Complementary & Alternative Cancer Therapies Conference; Annie Appleseed                                        Project; The Event Center, San Francisco, CA;   

More Information    

 

September 29, 2012

Living Beyond Breast Cancer Annual Conference: News You Can Use: Updates for Living Well; Philadelphia, PA; 

More Information 

 

September 30, 2012

Lynn Sage Breast Cancer Town Hall Meeting; Lurie Cancer Center, Chicago, IL; 

More Information 

 

October 13, 2012

Metastatic Breast Cancer Network 6th Annual Conference: Moving Forward with Metastatic Breast Cancer; Northwestern University, Chicago, IL; 

More Information  

 

November 30 - December 1, 2012

ASCO Quality Care Symposium; Manchester Grand Hyatt, San Diego, CA; advocate discounted registration rate by 10/24; 

More Information  

 

December 1 - 2, 2012  

3rd International Inflammatory Breast Cancer Conference; Sofitel Philadelphia, Philadelphia, PA;

More Information 

 

December 6 - 10, 2012

San Antonio Breast Cancer Symposium; Henry B. Gonzalez Convention Center, San Antonio, TX;   

More Information  

Updated Web Pages

IBC Symptoms
IBC Diagnosis
IBC Treatment
IBC Fascinating Factoid

Did you know that Sir Charles Bell first described what would later become named as IBC? His groundbreaking book, A System of Operative Surgery, Founded on the Basis of Anatomy, volume 2, published in 1814 contained the following: "When a purple colour is on the skin over the tumor, accompanied by shooting pains, it is a very unpropitious beginning." Translation--it's very bad news.

Want to read more about IBC in history?
Quick Links

About Us
Photos of IBC
IBC In Our Own Words
Make a Donation
Newsletter Archive
ibcRF Facebook Page
Breast Cancer: New Horizons, Current Controversies

 

Inflammatory Breast Cancer Research Foundation Executive Director Ginny Mason had the opportunity to both attend this recent conference at Harvard Medical School and participate as faculty for a session focusing on inflammatory breast cancer.  This 3-day meeting brought together about 350+ members of the oncology community and covered a wide variety of topics important to the breast cancer community.  This is an important continuing education program and provides up-to-date information for those professionals who may not be able to attend the large educational meetings. View the conference information and program.

Dr. Beth Overmoyer This year's conference dedicated two sessions to inflammatory breast cancer.  Dr. Beth Overmoyer, Assistant Professor of Medicine, Harvard Medical School and Director of the Inflammatory Breast Cancer Clinic at the Dana Farber Cancer Institute, gave an outstanding review of the diagnosis and treatment of inflammatory breast cancer specifically highlighting the differences in presentation between inflammatory breast cancer and locally advanced breast cancer.  A panel discussion followed Dr. Overmoyer's presentation bringing together representatives from various disciplines involved in the diagnosis and treatment of inflammatory breast cancer.  Dr. Craig Bunnell of Dana Farber/Brigham and Women's Cancer Center served as moderator and provided challenging case studies for the panel.  As the only advocate on the program, Ginny had the opportunity to call attention to the NCCN treatment and screening guidelines that have been developed for inflammatory breast cancer and how they can assist physicians in the diagnosis and treatment of inflammatory breast cancer.  Following the panel discussion there were multiple requests for information about the Inflammatory Breast Cancer Research Foundation and services provided.

Dr. Overmoyer also included an update on her current inflammatory breast cancer research project a JAK2 inhibitor study.  This work is funded in part by a grant from the Inflammatory Breast Cancer Research Foundation.  This is novel research exploring how this particular pathway (IL-6-JAK-STAT) is relevant in breast cancer, particularly inflammatory breast cancer.  This topic was addressed broadly in an ancillary program one evening during this year's American Society of Clinical Oncology Annual Meeting.  The transcript as well as the presentations themselves are available online as a continuing education program through PeerView.

Watch the presentation JAK Inhibition in Cancer: exploring a novel pathway. This presentation is available at no cost for viewing by anyone, simply indicate your area of interest "oncology" from the drop-down menu.

JAK inhibition in cancer treatment applies to a variety of cancer types.  The program covers gastric cancers, lymphomas and leukemias, as well as others.  This ability to use a targeted therapy in a variety of cancers makes it of broader value and encourages the development of other such products by the pharmaceutical industry.

As you will learn from Dr. Overmoyer's presentation, she has plans to move as quickly as possible into clinical trials for both inflammatory breast cancer and metastatic breast cancer, bringing new treatments to a population that often has limited treatment options. 
CAN YOU BELIEVE IT? 
WE'RE A 'LUCKY' 13 YEARS OLD!!

by Ginny Mason RN, BSN: Executive Director 

 

shamrock with number thirteen 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.

ibc research pin 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)."

squeaky wheels 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!