January 2011 
        
   Focus on IBC 
IBC RESEARCH FOUNDATION NEWSLETTER  
 
LOVE/AVON ARMY OF WOMEN
By, Ginny Mason, RN, BSN
Executive Director, ibcRF 
 

A unique resource in the breast cancer research community has been developed and implemented by The Dr. Susan Love Research Foundation and the Avon Foundation for Women.  These two groups have joined forces and launched the Love/Avon Army of Women.

 

The initiative has two key goals:

  • To recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all.
  • To challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

As of mid-January, 2011, there are over 34,000 "volunteers in the Army."  That's impressive, but far from the goal of one million stated in the key goals.  Dr. Love has been giving presentations all across the country to community groups, scientific meetings, and has appeared in television interviews to spread the word about the "Army of Women."  Not only are these public appearances designed to bring women into the "Army" they are also opportunities to educate the scientific community about the project, so they will make use of this unique research resource.  One of the challenges facing many researchers is finding the right people for a particular study.  Thanks to the "Army of Women" a scientist can use the project to find that target group of individuals needed for their research.

 

Those who join the "Army of Women" receive regular emails inviting them to participate in various research initiatives.  Some are specific to a given geographic area like the current sleep study recruiting individuals from a given area in California.  Other studies need only women who have not had breast cancer in contrast to those that are recruiting only women with breast cancer.  Each participant can read through the study criteria and determine if it is right for them and choose accordingly.  Detailed information on each study is available online. 

 

In case you're worried about confidentiality in a project like this, there is no need for concern.  According to the "Army of Women" website, the project "adheres to all the privacy guidelines required by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and will only work with researchers and institutions that adhere to all HIPAA regulations."  The project itself doesn't collect or store health information from participants.  The goal is to help researchers get the volunteers they need.

The "Army of Women" provides a way for all women to be involved in finding answers that will help us better understand breast cancer and the many factors that influence the who's, why's, and how's of the disease.

Consider joining in this quest.

Visit www.armyofwomen.org and learn more!

THANK YOU DANNY !!  Danny Lampert

 

Hi, my name is Danny Lampert and I just turned 13 and had my Bar Mitzvah.  A Bar Mitzvah is when you become a Jewish adult.  Part of my Bar Mitzvah project was to do a Tikun Olam Project (repairing the world.)  It was very hard to choose what I would do.  But after my Dad came up with the idea to raise money for Inflammatory Breast Cancer research, I knew it was the right thing to do. 

It was a very hard project to do, because my Mom suffered from this awful disease.  I hope that this money I raised helps find a cure to this disease.


HAPPY 2011 FROM THE IBCRF WEBSITE 

By, Carol McWilliams, ibcRF Volunteer Webmaster

To celebrate the New Year, the web site is being updated and renovated. Some small changes are already in effect. We have made all links blue and underlined to conform with web design best practices. These links were previously red and not underlined, causing confusion with the red page headings and subheadings. The right side submenu area, (the pale green block links) which varied in content from one page to the next has been removed and now carries an RSS feed from Clinical Trials.gov that shows the ten newest clinical trials for breast cancer. This feed means that as soon as a new clinical trial for breast cancer is posted on that site, it will appear right here on the Inflammatory Breast Cancer Research Foundation web site.There are many more clinical trials on that site, but we chose to display the most recent ten items to conserve space. To find all breast cancer clinical trials go to click here. On that page, you can specify only "open" trials, or all trials.
 
We have exciting new plans for the site, so watch this section of the newsletter each month.

Comments and suggestions from you, the newsletter readers, are very welcome. Contact your volunteer webmaster, Carol McWilliams, at [email protected].

Think of this: reduce, reuse, recycle! We will REDUCE the number of clicks needed to find timely, accurate information about IBC. We will REUSE nearly all the content you know and love, and to which you send your friends and contacts. We will RECYCLE by sharing timely information about IBC from authoritative sources, and by sharing the latest in research relevant to IBC.

All existing pages will be checked for currency of information and updated as needed. Some pages with similar topics will be combined to improve the flow of information. Temporarily, if you cannot "find" a page you need, simply use the Site Search box at the top of the left hand column.

 

 Upcoming  Events 

Jan. 27 -Teleconference: What Young Women Need to Know About Genetic Breast/Ovarian Cancer; 8:00 pm EST Email [email protected] or Call 646.257.3025 

Jan. 31 - Clinical Trial Myths; webcast; 8:30 - 10:00 pm  Click here.

Feb. 8 - FDA Oncologic Drug Advisory Committee Meeting; Silver Spring, MD Click here.

Feb. 9 - Teleconference: Coping with a Recent Breast Cancer Diagnosis; 12 - 1:15 pm EST Click here.

Feb. 26 - 13th Amelia Project - Giving Wings to Research; University Place Conference Center, Indianapolis, IN      Click here.

Feb. 25-27 - Annual Conference for Young Women Affected by Breast Cancer (C4YW); Peabody Orlando Hotel Click here.

Mar. 3-5 - 4th Annual Evidence-based Complementary & Alternative Cancer TherapiesConference; West Palm Beach, FL Click here.

Mar. 28-29 -  4th Annual Biospecimen Research Network (BRN) Symposium: Advancing Cancer Research Through Biospecimen Science; Bethesda, MD Click here.

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33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium 

 

     By, Ginny Mason, RN, BSN 

     Executive Director, ibcRF 

 

Close to 8000 people filled the Henry B. Gonzalez Convention Center in San Antonio, TX, December 8 - 12, 2010, for what has become one of the most important breast cancer conferences.  Since its beginnings as a small, somewhat informal gathering in a San Antonio hotel, this conference has grown by leaps and bounds.  When the Cancer Therapy & Research Center at UT Health Science Center San Antonio (originator of the symposium) was joined by the American Association for Cancer Research (AACR) and Baylor College of Medicine the symposium broadened from its focus on new clinical information to include cutting-edge ideas and technologies from the broader breast cancer research community.

This year's symposium provided a wide variety of plenary sessions, mini-symposia, oral presentations, and posters covering such hot topics as CYP2D6 as a predictive factor for tamoxifen effectiveness, first results of the Neo ALTTO Trial, and the Role of Irrationality in making decisions.  In spite of the growing size of the symposium, planners still endeavor to provide the bulk of information through large sessions held in the main auditorium.  Lunch time Basic Science forums were included this year as well as Case Studies, just in case attendees weren't getting enough information!

Each evening, thanks to the Alamo Breast Cancer Foundation, advocates had the opportunity to listen to a panel of breast cancer experts review the highlights of the day's topics.  It's no surprise the room was crowded with advocates, as well as others, who were grateful to have the wealth of information from the sessions distilled into understandable, usable take home messages.  The panel changed each evening bringing a variety of expertise and points of view to the sessions.  Attendance at the mentor sessions is required for those advocates who received a scholarship from the Alamo Breast Cancer Foundation to attend the Symposium, but judging by the limited empty seats the sessions are popular beyond the scholarship recipients.

SABCS 2010
Ginny Mason discusses the poster of Dr. Sue Clare of Indiana University 

Each day began with poster presentations and continental breakfast.  Attendees worked their way up and down the long rows of posters, juggling coffee, breakfast and lists of poster abstracts.  A second poster session was held at the close of sessions each day.  Once again one end of the exhibit hall was crowded with people milling about the posters while sampling the assortment of snacks served by the talented convention food service personnel. The poster sessions provided an opportunity for one-on-one conversations with individual researchers about their work.  It would be impossible to stop and examine every poster available in a given session, so it is important to prepare ahead and read through the abstracts to pick out posters of interest. 

Unfortunately, inflammatory breast cancer (IBC) was not a popular topic at this year's symposium.  It was mentioned a time or two during the course of the meeting, and there were about 20 posters on IBC specific research or trials that included IBC.  I made an effort to stop by each of the IBC posters and talk with the presenter, but found many of the posters unattended this year.  By giving them a business card and brochure, they learn about the Inflammatory Breast Cancer Research Foundation and our commitment to supporting and facilitating quality research.

It is difficult to give an overview of such an extensive conference in a short article.  However, I'd like to highlight two specific presentations from the meeting.  On Friday morning, Neil L. Spector, M.D., of the Duke Comprehensive Cancer Center in Durham, NC, delivered a comprehensive overview of Her 2 and the currently available targeted therapies against it.  Dr. Spector covered the numerous clinical trials of the Her2 targeted therapies, closing with a discussion of the newest agents TDM1, pertuzumab, and a polyclonal vaccine.  Dr. Spector is known to the IBC community for his work on the Her2 targeted therapy Tykerb (lapatinib.)  It was Dr. Spector's tireless efforts that encouraged GlaxoSmithKline to study this compound in the IBC patient population. Click here to hear the entire presentation.

This year's William L. McGuire Lecture was given by George W. Sledge, Jr, M.D., Professor of Medicine and Pathology at the Indiana University School of Medicine in Indianapolis; where he is the Ballve-Lantero Professor of Oncology.  The McGuire Memorial Lecture, honors William L. McGuire, M.D., one of the founders of the symposium and a noted cancer researcher of his time.  Dr. Sledge was one of the first medical oncology fellows at the University of Texas Health Science Center at San Antonio trained by Dr. McGuire.  His presentation, "What Would Bill Do?  Channeling Your Inner McGuire" was given to a standing room only crowd.  Dr. Sledge's presentation was insightful and engaging, encouraging all who heard it to find new ways of tackling the problem of breast cancer. To view a webcast of the presentation click here and choose the McGuire Lecture under Saturday topics.  Dr. Sledge is the current President of the American Society of Clinical Oncology (ASCO) and serves on the Medical Advisory Board for the Inflammatory Breast Cancer Research Foundation.

Those who endured to the end of the symposium were treated to another "The Year in Review", a highlight of last year's program.  A panel of distinguished speakers provided a report and synthesis of major developments in breast cancer during the past year.   To access the webcast click here and go to the Year in Review under Sunday's topics.

For a complete listing and to view posters, podcasts, webcasts and other materials from this year's San Antonio Breast Cancer Symposium visit www.sabcs.org.  

   

ANNUAL ADVOCACY TRAINING CONFERENCE  

 

April 30 - May 3, 2011, the National Breast Cancer Coalition (NBCC) will offer their Annual Advocacy Training Conference at the Hyatt Regency Crystal City in Arlington, VA.  For those not familiar with this conference, it is an outstanding opportunity to network and learn important skills needed for effective work in the breast cancer advocacy community.

This year's conference will highlight the Breast Cancer Deadline 2020 � an initiative that "focuses on how to stop breast cancer metastasis from taking women's lives and how to prevent the disease from developing in the first place."  At the conference you will learn:

  • Critical thinking skills around breast cancer science and research.
  • How to change systems towards ending breast cancer by 2020.
  • Tools to recruit additional support for Breast Cancer Deadline 2020 �

A limited number of scholarships are available for the conference.  Scholarships are only given to NBCC members, so if you're interested; become a member or renew your membership right away! (Scholarships can cover hotel costs for up to three nights in a shared room, most meals, plus conference registration.)  Whether you're a first time attendee or returning advocate, there's something for everyone at this conference.  Outstanding workshops, plenary sessions with noted speakers, and time to visit and mingle with other advocates; you'll find all this and more packed into the three days.  For many, the chance to be involved in political action is the drawing card for this conference.  Lobby Day on Tuesday, May 3, allows advocates to put their training into action during visits to Members of Congress, urging them to support NBCC's legislative priorities.

 

"Early Bird Registration" is available through February 11, so act now to get an even better deal!  Click here for more information on the conference, program, scholarships, and more.