Upcoming Events
Oct 1: News You Can Use: Breast Cancer Updates for Living Well; LBBC's Annual Fall Conference. More Information. Oct. 2: Lynn Sage Breast Cancer Town Hall Meeting: Arthur Rubloff Bldg, 375 E. Chicago Ave., Chicago, IL. More information. Oct 2-5: Oncology Nurses Symposium; San Diego, CA. More information. Oct 12: Living Well with Metastatic Breast Cancer: Understanding Your Treatment. Teleconference 12:00-1:15 pm EDT More information. Oct 12-15: Advances in Breast Cancer Research: Genetics, Biology, and Clinical Applications; American Association for Cancer Research; San Francisco. More information. Oct 13: Metastatic Breast Cancer Awareness Day More information. Oct 21: 2011 Cancer Legal Rights Conference; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI. More information.
Oct 24: The Role of Palliative Care: Exploring What's Meaningful to You; teleconference; 12:00-1:15 p.m. EDT More information. Oct 27-29: 7th Annual Chicago Supportive Oncology Conference; Chicago, IL. More information. Oct. 29: Metastatic Breast Cancer Conference; Johns Hopkins Hospital, Baltimore, MD. More information. Nov 8: 16th Annual New York Gala; National Breast Cancer Coalition; New York City, NY. More information. Dec 6-10 San Antonio Breast Cancer Symposium More Information |
Recently updated are the photos of IBC on the web site. These photographs are frank. The first set of photographs show typical visual clinical symptoms that appear at time of diagnosis, before treatment. Remember there are often non-visual symptoms that include itching, pain, and skin thickening. The second set of photographs depict what are commonly called skin mets (metastases). The first photos are of early skin mets, the other of a more advanced case of skin mets. Since IBC is in the lymphatic channels of the skin, local/regional recurrence in the skin is not uncommon, even after radiation treatments. More photos will be added within the next month, and we wish to thank the IBC women who have provided these images for use on this web site. And the stories keep on coming! New to the In Our Own Words section are the story of Jerry's wife and Lesa Graybill. Do you Facebook? So do we! 
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Ticket Sales to Benefit Inflammatory Breast Cancer Research Foundation
Women STILL Standing, LLC presents "Honoring Our Women" a Black Tie Gala, Celebrating a Triumphant Year of Service. The event will be held Saturday, December 3, 2011 at the Renaissance Philadelphia Airport Luxury Hotel. The Gala includes: Full Course Dining, Bachelor Silent Auction Fashion Show, Award Ceremony, and More. Women STILL Standing will donate a portion of the proceeds from their gala ticket sales during the month of October to the Inflammatory Breast Cancer Research Foundation, in support of the mission and goals of the organization. Women STILL Standing acknowledges the importance of educating women about important health issues so chose to partner with the Inflammatory Breast Cancer Research Foundation to help raise awareness of inflammatory breast cancer. Our thanks to Women STILL Standing for their generosity. Click here for more information on the Gala or for tickets. |
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INFLAMMATORY BREAST CANCER RESEARCH FOUNDATION REMEMBERS OUTSTANDING ADVOCATE: KATHLEEN LIVINGSTON
On September 20, 2011 the inflammatory breast cancer (IBC) community lost an important voice. After 13 years of treatment for IBC, Kathleen Livingston passed away at home with loved ones at her side.
 Kathleen contacted the Inflammatory Breast Cancer Research Foundation not long after the organization began, seeking information. Education was of utmost importance to Kathleen and she was always researching and studying, learning what she could about this deadly disease and how to attack it. Always ready to personally aid research, Kathleen participated in numerous clinical trials. Unfortunately her disease was tenacious and no treatment was able to provide a durable response. For much of the time Kathleen's disease was confined to skin metastasis on her chest and back. Chemotherapy and targeted treatments slowed the growth but couldn't stop it from progressing and earlier this year it spread to her lungs. In spite of her disease, Kathleen managed a grueling schedule of breast cancer advocacy activities while fitting in some of her favorite activities like tennis and skiing. Kathleen managed her disease with such grace and dignity that most people weren't aware of the extent of her disease. It wasn't until chemo robbed her of her hair that it was evident she was receiving chemotherapy.
Not only was Kathleen active with the Inflammatory Breast Cancer Research Foundation, she served as a consumer reviewer with the Department of Defense Breast Cancer Research Program, reviewed grants for Susan G. Komen for the Cure, and was President of the Michigan Breast Cancer Coalition. She was active in the National Breast Cancer Coalition (NBCC) and represented the Inflammatory Breast Cancer Research Foundation on the NBCC Board of Directors. As NBCC Field Coordinator for Michigan, Kathleen provided leadership for advocates going to Capitol Hill to lobby in support of NBCC breast cancer initiatives. The annual NBCC Advocacy Training Conference and Lobby Day were opportunities for Kathleen's passion to shine.
In addition to all her official duties, Kathleen was relentless in her pursuit of information. She was a regular attendee at the San Antonio Breast Cancer Symposium, American Association for Cancer Research, and American Society of Clinical Oncology meetings. She was a graduate of the NBCC Project LEAD breast cancer science education program as well as the Clinical Trials LEAD program. Kathleen truly believed knowledge is power and in order to be an effective advocate for herself and others she worked diligently to learn all she could.
While Kathleen's passing will be felt by all those in the breast cancer advocacy community, it is especially difficult for those of us who knew her well and worked closely with her for nearly 12 years. Kathleen was adamant about the need for quality research and was dedicated to the mission and goals of the Inflammatory Breast Cancer Research Foundation. Our heartfelt thanks to Kathleen, an amazing advocate and to her husband Peter for his continued encouragement and support.
It is in memory of Kathleen and others whose lives have been snatched away by this dreadful disease, that the Inflammatory Breast Cancer Research Foundation will continue its work.
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NEW CONTRIBUTOR - SUSAN NIEBUR
 Welcome to a new contributor to the newsletter -- four time IBC survivor, astrophysicist, and mom of two happy little 4 & 6 year old boys. Susan's award winning blog, Toddler Planet chronicles her journey to find "that "new normal." A recent entry is of special interest to the IBC community.
Inflammatory Breast Cancer: Genetic Origins?
For years, now, I've beaten myself up over how and why I got inflammatory breast cancer (IBC). Was it that I drank too many diet cokes while studying for college exams? Was it that I worked in a physics department and there was more than one mercury spill in the lab, unbeknownst to me? Was it the water we swam in off the Maryland coast when I was so very pregnant, where we saw the industrial plant nearby as we were leaving? Did I eat too many cheese-its and other processed food? Why, God, why?
Ahem.
I may have overreacted, back when I was first diagnosed and new to the topic, and of course at each recurrence - it's only natural.
But we do know a few things about the origins of cancer. In addition to a person's actions and direct exposures (like Chernobyl and other disasters), some cancers have environmental origins, which an individual can do little about. Some cancers are exacerbated by lifestyle factors, like smoking, overeating, and lack of exercise. We know that now, and we know that we all can reduce our risk of cancer by eating fresh foods, by exercising, and by keeping our weight at a reasonable figure. There is one more promising source, though, that we haven't yet been able to do much about yet, and that's genetics. Some people have a gene that causes cells to mutate and grow more quickly than typical cells, and some of those people will develop precancers and full-blown cancers (and that sucks!).
The IBC Research Foundation announced today that they have raised $50,000 and given a research grant to Dr. Heather Cunliffe, Ph.D., to determine the genetic origins of triple-negative IBC. My hands are shaking as I type this. This is what we've wanted and needed - this is REAL hope. Not pink-ribbon hope, but REAL hope to find a cause, and then a cure, for inflammatory breast cancer, which still kills half of the people it plagues within 5 years.
This is what I've been waiting for. And all it took was $50,000 in donations.
One of which was mine.
I'm adding Dr. Cunliffe to my prayers this week. I pray that she stay strong, and dedicated, and that she have the right tools and support to FIND the GENE that causes my cancer, and that that knowledge then can be USED by her or others to find out how to turn it off.
So that others don't have to suffer.
I'm over the moon about this news, and I wanted to share this with you - even at the risk of trolls appearing in my comments telling me that I did, actually, cause my cancer by snacking on diet coke and cheese-its. This news isn't about me. It's about reducing risk for those who come after me, and it is WONDERFUL news!
Congratulations, Dr. Cunliffe, and THANK YOU, IBC Research Foundation!
To donate, visit the IBC Research Foundation's website; if you wish, you can mark your check "for research." I did, and I'm so excited to see how my donation and others are being used!
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INFLAMMATORY BREAST CANCER RESEARCH FOUNDATION GRANT GIVEN
TO HEATHER CUNLIFFE, PhD, OF TGEN
 Earlier this month the Inflammatory Breast Cancer Research Foundation announced the first of two research grants to be given in 2011. Heather Cunliffe, PhD, of Translational Genomics Research Institute (TGen), Phoenix, AZ, received an award of $50,000 to pursue work on the molecular underpinnings of triple negative inflammatory breast cancer. The ultimate outcome is to identify new therapeutic targets for treatment and better understand the disease. Read the press release.
Dr. Cunliffe, Head of the Breast and Ovarian Cancer Research Unit at TGen, has developed a special interest in the study of IBC thanks to a group of determined IBC advocates. Early in 2006, after becoming aware of breast cancer research going on right in their "backyard" at TGen, three women in the midst of IBC treatment made an appointment to meet Dr. Cunliffe. These women were part of a local IBC support group and knew that quality research would improve diagnosis and treatment for their disease. Following their meeting one of the women contacted the Inflammatory Breast Cancer Research Foundation to set up a conference call with Dr. Cunliffe. Through that call, it was clear that we had found an ally in Dr. Cunliffe and began exploring how Dr. Cunliffe's research expertise could be leveraged for the benefit of IBC patients.
The Phoenix IBC group were excited about the collaboration they had helped facilitate and took on the task of raising some 'seed money' for an exploratory research study using IBC cell lines and microarray-based technology to identify and explore commonalities and differences in IBC and standard breast cancer. The resulting data was presented in a collaborative poster at the San Antonio Breast Cancer Symposium in 2007. The Inflammatory Breast Cancer Research Foundation is indebted to those Phoenix IBC advocates for their vision and action in establishing this important IBC research collaboration with Dr. Cunliffe and TGen.
Since that time Dr. Cunliffe and her lab have continued a special interest in IBC, seeking out opportunities to collaborate and increase understanding of the disease. Essential to Dr. Cunliffe's work is the ability to access high quality samples of IBC tissue for analysis, a reminder of the importance of the Inflammatory Breast Cancer Research Foundation BioBank and clinical data base. To understand IBC on a molecular level requires human tissue and that can be challenging for individual researchers. Patients need to realize the importance of tissue in research and their role in making it available.
Funding for the 2011 grants was made possible through a collaboration of the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation. A generous gift from the Milburn Foundation enabled the Inflammatory Breast Cancer Research Foundation to expand the grants program this year and give two research awards. The second will be announced at a later date. The grants process involves inviting a select group of researchers, with a particular interest in IBC, to submit proposals and associated materials. Those proposals are reviewed by the Medical Advisory Board then by the IBC Research Foundation Board of Directors. Grants are awarded based on relevance of the work to the IBC patient population, translational potential, innovation, and feasibility. The number of awards is dependent on available funds.
An interview with Dr. Cunliffe was featured in a pervious issue of Focus. To learn more about Dr. Cunliffe and what drives a scientist to spend day after day trying to understand a complex disease like inflammatory breast cancer, read a previous article from the Focus on IBC newsletter.
And learn more about Dr. Cunliffe's work and her lab at TGen.
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METASTATIC BREAST CANCER AWARENESS
As you know Breast Cancer Awareness Month is about pink ribbons, early detection and survivors. This leaves those with metastatic disease feeling isolated.
The Metastatic Breast Cancer Network wants the voice of metastatic breast cancer patients to be heard and MBCA Day gives the perfect opportunity to work together to raise awareness so that no one ever has to feel they are alone living with metastatic breast cancer.
What can you do? Visit the MBCN Awareness page and take action now!
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