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In Memory
Mary Patricia ("MP) Jamison Repp
On January 16, 2010, our friend and IBC sister MP Jamison Repp (Mary Pat) passed away. MP was the driving force behind the Phoenix IBC group that meets regularly to provide support and encouragement to those in the Phoenix general area dealing with IBC. She was also one of the (couple) women who, after learning that breast cancer research was being done in Phoenix by a top-notch laboratory, went to meet with the head of the breast cancer research department and said, "What would it take to get you to study IBC?" In just a few short months, (she) they were back in that office with a check for ($25,000 pushing for) IBC research.
It was that kind of spirit and determination that allowed MP to survive continued recurrence and treatment (18 months with minimal treatment. She didn't tolerate the side effects of the chemo so opted to stop after a number of cycles, but did continue with some radiation and Herceptin.) Thanks to lots of support, she was able to enjoy time with family and friends, especially her grandson, these (past 18) challenging months and felt blessed in many ways.
I was blessed to know MP as a friend and will miss her terribly. The IBC Research Foundation community has lost an important advocate, but her influence remains. A group of family and friends started an organization called MP's Wish (you can find it on Facebook) to continue to educate about IBC and help raise money for continued IBC research.
Ginny Mason, RN, BSN
Executive Director, ibcRF |
| Upcoming Events |
Jan 24-25 - National Breast Cancer Coalition Board Meeting, Washington DC; Click here.
Feb 3 - Cancer Survivorship: What Does Culture Have to Do with It? Teleconference
Feb 10 - FDA Oncologic Drugs Advisory Committee; Gaithersburg, MD
Feb. 13 -
Amelia Project Breast Cancer Research Meeting; University Place Hotel; Indiana University, Indianapolis, IN
Feb. 26-28 - 10th Annual Young Women Affected by Breast Cancer Conference, Atlanta, GA; Click here.
May 22-25 -National Breast Cancer Coalition Fund Annual Advocacy Training Conference; Washington, DC
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 Quick Links for IBC Patients and Caregivers
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1-877-STOP-IBC
1-877-786-7422
email:
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Happy New Year
2009 Annual Letter
Each year we take the opportunity to review the Inflammatory Breast Cancer Research Foundation's activities for the year. CLICK HERE to read about the highlights of 2009 and hear about our hopes for 2010! |
(Press Release)
FDA Unveils First Phase of Transparency Initiative
FDA Basics aims to help consumers gain better understanding of agency
The U.S. Food and Drug Administration today unveiled the first phase of its Transparency Initiative which is designed to explain agency operations, how it makes decisions, and the drug approval process.
During an online presentation, the chair of the FDA's Transparency Task Force, Principal Deputy FDA Commissioner Joshua Sharfstein, described a Web-based curriculum called "FDA Basics," aimed at helping the public better understand what the agency does. The curriculum is accessible via a link on the FDA Web site.
The curriculum includes:
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Questions and answers about the agency and the products it regulates
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Short videos that explain various agency activities
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Conversations with agency personnel about the work of their office
In addition, senior officials from FDA product centers and offices will answer questions on various topics during future online sessions. Each of these sessions will be announced on the FDA Web site.
In one of her first acts after assuming the office last spring, FDA Commissioner Margaret A. Hamburg, M.D. announced the formation of an internal task force to develop recommendations for enhancing the transparency of the FDA's operations and decision-making processes.
The Transparency Initiative was launched in response to the Obama Administration's commitment to an unprecedented level of openness in Government and with the strong support of the Department of Health and Human Services.
"This initiative will make information about the FDA more user-friendly and accessible to the public," said Dr. Hamburg. "It fosters a better understanding about what we do."
"The launch of FDA Basicsis our first step towards making FDA a more transparent agency," said Dr. Sharfstein.
In recent months, the Task Force solicited public input on improving agency transparency through a public docket, an online blog, and two public meetings. The Transparency Task Force received hundreds of comments from various stakeholders, including regulated industry, consumers, patients, health care providers, and others. As a result of comments from the public, the Task Force decided to develop its recommendations in three phases. FDA Basics represents the result of the initial phase, to be followed by two additional phases.
In phase two of the initiative, the Task Force intends to make recommendations to the Commissioner regarding how to make information about agency activities more transparent, useful, and understandable to the public, in a manner compatible with the agency's goal of protecting confidential information, as appropriate.
In the final phase of the initiative, the Task Force intends to make recommendations to the Commissioner regarding FDA's transparency to regulated industries.
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DIGNITY Trial Update
Provided by:
Sylvia A. Lewis, MS, BSN
Sr. Director, Clinical Operations
Celsion Corporation
The DIGNITY study is for women who havea recurrence of their breast cancer to their chest wall (loco-regional recurrent chest wall breast cancer). These women could be treated with a procedure called mild hyperthermia (therapeutic heat) in combination with a research drug, ThermoDox®. Mild hyperthermia is a technique that delivers therapeutic heat to certain surface or subsurface malignant (cancerous) tumors as a treatment. ThermoDox® is an experimental drug that releases high concentrations of a potent cancer drug, doxorubicin, as it passes through a part of the body that has been warmed by therapeutic heat. The United States Food and Drug Administration has cleared therapeutic heat for the treatment of recurrent chest wall breast cancer. The main purpose of this study is to find out if adding ThermoDox® to therapeutic heat will increase how long the breast cancer stays away after treatment. In this study, we will also examine the safety of ThermoDox®.
Currently the DIGNITY trial has enrolled 2 patients into the Phase I portion of the trial. No serious side effects have been reported and the patients tolerated the treatment. To complete the Phase I trial, Celsion needs at least six more patients to be enrolled and treated, and then an evaluation by the Data Safety Monitoring Board, to determine if the trial can move into the Phase II stage of development where patients would then be treated with the maximum tolerated dose (this is the dose that would be determined to be the most effective, but safest, dose for patients with recurrent chest wall breast cancer).
For more information on this trial, please contact Sylvia Lewis, Celsion's Sr. Director. Sylvia can be reached at slewis@celsion.com or 484-883-9964.
**This article is intended for informational and educational purposes only and in no way should be taken to be the provision or practice of medical, nursing or professional health-care advice or services. The information should not be considered complete or exhaustive and should not be used for diagnostic or treatment purposes without first consulting with your physician or other health-care provider. The Inflammatory Breast Cancer Research Foundation accepts no responsibility for the misuse of information contained within this website, email response or within the Email discussion messages. Clinical trial information is provided as a courtesy only and does not imply endorsement or recommendation by the Inflammatory Breast Cancer Research Foundation.
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