IBC Awareness Day bill advances
Posted on 21. Aug, 2022 by ibcneco1 in News
BOSTON (August 12, 2022) — A bill to establish a permanent Inflammatory Breast Cancer Awareness Day took a major step forward with a unanimous vote of approval from the Massachusetts House of Representatives.
The bill, H. 3147, would designate a permanent day in October to recognize and promote education about inflammatory breast cancer. Rep. Sean Garballey (Arlington) has been leading the effort to advance the bill through the House. Rep. Garballey, who is also a member of the board of IBC-New England Region Inc., is working to get the bill reviewed by the Senate.
The effort was initiated by IBC-New England Region Inc. several years ago. A number of board members, providers, and women with IBC and their families have joined the effort to support the bill. The designation would not involve any cost to the state.
This designation will support and strengthen the efforts of patients, caregivers, and health care providers to educate and build awareness about this rare and aggressive form of breast cancer. Establishing a unique day to recognize IBC creates an opportunity for providers, cancer centers, and patient organizations to hold educational events for the public, women diagnosed with IBC and their families. These activities may include presenting and distributing information about IBC, services, and resources. Some groups may want to host expert speakers.
IBC is an aggressive form of breast cancer. Its symptoms are atypical and there is not generally a lump present. The cancer is virtually undetectable with standard mammography. The disease is the least understood type of breast cancer.
For more information on the IBC Awareness Day, contact Sue at 781-447-0848.
Networking group to meet August 20, 2022
Posted on 24. Jul, 2022 by ibcneco1 in News
The networking group of Boston will hold a meeting on Saturday, August 20 at noon at Wegman’s in Burlington, Mass. Bring your chairs and snacks and meet outside. Please RSVP to group coordinator at 781-447-0848 by Monday, August 15.
Pre-Covid our networking group had been meeting at the Church of Our Saviour in Milton. Many venues are not open to public meetings due to the ongoing pandemic. If you have suggestions for outdoor meeting ideas in your area, please call the coordinator. We have held meetings in Wareham, Norwood, Burlington, and other locations.
Dana Farber IBC Patient Forum April 30
Posted on 17. Apr, 2022 by ibcneco1 in Uncategorized
(April, 2022) The fifth annual Dana Farber IBC Patient Forum will be held Saturday, April 30.
This year’s program will feature the latest in radiation treatment from Dr. Jennifer Bellon, patient centered research initiatives from Dr. Nikhil Wagle, cancer biomarkers with Dr. Antonio Giordano and updates on IBC research with Dr. Filipa Lynce. Patients will also have the opportunity to learn about supportive services available for patients with IBC and join a virtual Support Group for patients with IBC and their loved ones.
The event is virtual and Free. Please register to receive the link.
Monthly Zoom meetup launches in 2022
Posted on 07. Dec, 2021 by ibcneco1 in News
The nonprofit organization, survivingbreastcancer.org, is launching a monthly Zoom meeting on January 13, 2022 for women with inflammatory breast cancer (IBC).
The networking/support group is free and open to anyone with a diagnosis of IBC.
The group will be held from 7 p.m. to 8:30 p.m. (ET), and facilitated by Dr. Nancy Gaulin. The meetup will be held on the second Thursday of every month.
RSVP now for the January meeting. Each month, register online at survivingbreastcancer.org and a link will be sent to you.
Register here:
Thursday Night Thrivers IBC Meetup | SBC (survivingbreastcancer.org)
All of the online meetups organized by survivingbreastcancer.org aim to bring the community together. Join us the second Thursday of every month as we discuss inflammatory breast cancer, treatments, side effects, and gain valuable support. Our Thursday Night Thrivers Meetup is a “come as you are,” safe, and welcoming space. Our IBC meetups are peer-to-peer led by Susan Asci and professionally facilitated by Dr. Nancy Gaulin, Psy. D., MBA.
The mission of SurvivingBreastCancer.org (SBC), a federally recognized 501(c)(3) non-profit organization, is to empower those diagnosed with breast cancer and their families from day one and beyond. SBC serves as an educational and virtual community platform- offering support from meeting patients and their families where they are on the continuum of a cancer diagnosis. SBC incorporates an integrative and collaborative approach to breast cancer, from risk reduction strategies and prevention, to treatment, survivorship, and living with a terminal diagnosis.
SBC offers a range of educational podcasts, webinars, writing workshops, blogs, and opportunities to meet and share ideas online. Their weekly e-newsletter has more than 10,000 subscribers. The site has visited by hundreds of thousands of breast cancer survivors each year since its founding in 2018.
The Zoom series for women with IBC is coordinated in collaboration with Susan Asci, 20-year IBC survivor and founder of the IBC Networking Group of Boston. Dr. Gaulin has facilitated this group for the past 10 years. The networking group of Boston holds face-to-face meetings quarterly in Milton (at the Church of Our Saviour) and sites in other communities around Boston.
Find support and information with survivor site
Posted on 01. Nov, 2021 by ibcneco1 in News
Women across the country are finding valuable information and support on a comprehensive online resource founded by a Massachusetts breast cancer survivor.
The site, survivingbreastcancer.org, was created by breast cancer survivor Laura Carfang and launched in 2018 with its podcast, “Breast Cancer Conversations,” offering weekly episodes to listeners. Today, the site offers educational webinars, support groups, and other events, to tens of thousands of readers across the country.
Here is the website: https://www.survivingbreastcancer.org/
The resource grew quickly and today offers weekly virtual support groups for women with breast cancer, including the “Thursday Night Thrivers,” and “Living with Metastatic Breast Cancer.” Thousands of readers are exploring blog posts, educational webinars and virtual programs, podcasts with “Breast Cancer Conversations,” educational information, a poetry forum and writing workshops, a book club, a group for adolescents, local events and meetups and more.
By 2019, 17 community events were held in 11 states. More than 26,000 website visitors spent time reading blogs and educational information.
Survivingbreastcancer.org sends out weekly newsletters on Mondays to its email subscribers. Newsletters include editorials, stories, events and programming and announcements. On Friday, they distribute a #FeatureFriday newsletter which is a roundup of timely topics and themes from various news, media and scientific outlets.
In 2020, the site grew exponentially serving the U.S., Canada and the UK and reaching 10,000 subscribers to our weekly newsletter.
The organization’s mission is to offer comprehensive programs serving:
- Those diagnosed with breast cancer
- Those living with metastatic breast cancer
- Spouses, families, and children caring for a loved one diagnosed with breast cancer
- Spouses, families, and children who have lost a loved one to breast cancer
For more information, check out the site and sign up for the newsletter, support groups, or other online events.
2021 meeting update: IBC support begins digital offering
Posted on 17. Sep, 2021 by ibcneco1 in News
September 17, 2021 — The IBC networking group is starting a series of Zoom meetings this fall. The meetings will be facilitated by Dr. Nancy Gaulin, who led this group for many years prior to the pandemic.
If you have been diagnosed with inflammatory breast cancer and would like to talk with others to share information and support, contact the group coordinator and 20-year IBC survivor (Sue at 781-447-0848) about joining the Zoom meeting schedule.
The networking group will also continue to offer face-to-face meetings at outdoor venues north and south of Boston, as interest level returns. Since the pandemic, we introduced outdoor meetings in Burlington, Buzzards Bay, and Norwood. We hope to return to an indoor venue when it is safer for participants when the pandemic eases and restrictions are lifted. For the past several years, the group has met regularly at the Church of Our Saviour in Milton, MA.
Remembering Jack Erban
Posted on 04. Oct, 2020 by ibcneco1 in News
It is with tremendous sadness that we offer our deepest sympathy to the family, friends, and colleagues of Dr. Jack Erban, a long-time friend, consul, advisor, and board member of IBC-NE Region.
It is difficult to capture the loss in words.
For his patients and friends in the cancer community, it is a huge loss of a brilliant oncologist who took compassion and commitment to the highest levels. In the inflammatory breast cancer community, we lost a leading researcher and supporter of efforts to build awareness and learn more about this rare disease.
After completing a fellowship Tufts Medical Center’s Division of Hematology/Oncology Jack joined the professional staff and was appointed to the faculty at Tufts Medical School. He served in many roles at Tufts, including as Chief of the Division of Hematology/Oncology, and Co-Director of the Breast Cancer program. He spent three years at Massachusetts General Hospital as Director of Clinical Programs for the Breast Oncology Center. He was an Associate Professor of Medicine at Harvard Medical School. He returned to Tufts in 2011 as the Clinical Director and Associate Director for Clinical Science of the Tufts Medical Center Cancer Center. He was the long-time volunteer medical editor for the TUSM alumni publication, Tufts Medicine.
Jack’s professional contributions and accomplishments are expansive.
Among the many research projects and initiatives that he was involved in, he was instrumental in advancing the efforts of the Inflammatory Breast Cancer Initiative (2002) and published a meta-analysis on this most misunderstood form of breast cancer. He served as a mentor, advisor, and editor for our group was we work to provide educational material and programs for IBC patients, their families, and providers.
Jack was an extraordinary doctor and passionate scientist.
Jack’s spirit and legacy, I believe, will continue through the work of his colleagues, friends, students, and through the lives of thousands of cancer survivors that received the most compassionate and best care that he could provide on their journey.
For those wishing to honor Jack, contributions may be made to Silent Spring Institute or the Cam Neely Foundation for Cancer Care.
IBC Awareness Day in Massachusetts
Posted on 13. Oct, 2011 by ibcneco1 in News, Uncategorized
We are pleased to announce that Massachusetts Governor Deval Patrick has officially proclaimed Tuesday, October 18, 2011, as Inflammatory Breast Cancer Awareness Day in the state.
This recognition was made possible through the efforts of Massachusetts State Representative Martin Walsh (Dorchester), on behalf of Inflammatory Breast Cancer New England Region Inc. IBC New England was founded in 2009 as a charitable nonprofit, dedicated to supporting education and building awareness about inflammatory breast cancer.
This recognition was made possible through the efforts of Massachusetts State Representative Martin Walsh (Dorchester), on behalf of Inflammatory Breast Cancer New England Region Inc. IBC New England was founded in 2009 as a charitable nonprofit, dedicated to supporting education and building awareness about inflammatory breast cancer.
IBC Board Secretary James Brett took the lead on this project to secure a special awareness day for IBC.
The text of the proclamation reads as follows:
Commonwealth of Massachusetts
A Proclamation
His Excellency Governor Deval L. Patrick
Whereas Inflammatory Breast Cancer is an aggressive form of breast cancer, constituting one to five percent of all breast cancer cases in the United States; and
Whereas The five year survival rate for people with Inflammatory Breast Cancer is between 25 and 50 percent, significantly lower than other forms of breast cancer; and
Whereas Screening rates are declining and a recent study revealed that among the 1.5 million women studied over the age of 40 with health insurance, less than fifty percent received the recommended annual screening; and
Whereas Younger women and women of African American descent are disproportionately affected by Inflammatory Breast Cancer; and
Whereas Various local and national organizations have helped men and women in communities throughout the Commonwealth recognize the importance of early detection and annual mammograms through outreach, education, and screening programs; and
Whereas The 2.5 million breast cancer survivors living in the United States today are a testament to courage, as well as to the importance of promoting awareness about breast cancer, providing information, funding research, following recommended screening guidelines, and offering treatment to those who are affected; and
Whereas Throughout the month of October, women are encouraged to make a renewed commitment to following recommended screening guidelines and to make a mammogram appointment,
Now, Therefore, I, Deval L. Patrick, Governor of the Commonwealth of Massachusetts do hereby proclaim October 18, 2011 to be,
Inflammatory Breast Cancer Awareness Day
And urge all the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance.
Given at the Executive Chamber in Boston, this seventh day of October in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty-fifth.
By His Excellency
Deval L. Patrick
Governor of the Commonwealth
William Francis Galvin
Secretary of the Commonwealth
God Save the Commonwealth of Massachusetts
IBC New England asks that you will join us in our effort to build awareness about inflammatory breast cancer and share information with others about our website, and resources. If you would like additional information, send us an email through the “Contact us” link on the site.
Educational Brochure Published
Posted on 20. Dec, 2010 by ibcneco1 in News, Uncategorized
IBC New England Region Inc. has recently published an educational brochure about the disease. The new educational brochure is available here. IBC Brochure
Redness, swelling, and a range of changes in the skin are among the leading symptoms of inflammatory breast cancer.
The brochure details how the disease is detected, what to do if you observe a sudden onset of symptoms, and where to find local support in New England.
The brochure was published with the generous support of Savings Bank Life Insurance of Woburn, Mass.
For more information about the brochure, or if you would like to assist with its distribution, please contact Susan Asci at (781)961-1518.
Catalyst Fund Awards Grant to Inflammatory Breast Cancer New England Region, Inc.
Posted on 19. Feb, 2010 by ibcneco1 in News, Uncategorized
CONTACT:
Susan Ryan-Vollmar
Blue Cross Blue Shield of Massachusetts Foundation
617.246.2404
susan.ryanvollmar@bcbsma.com
Four community health organizations around the Commonwealth have been awarded capacity building grants from the Catalyst Fund. The funds will be used to purchase an automated electronic defibrillator, professional staff development, and the purchase of computer equipment.
The Catalyst Fund is administered by the Blue Cross Blue Shield of Massachusetts Foundation and is funded entirely with donations from employees of Blue Cross Blue Shield of Massachusetts. (The Foundation was founded by Blue Cross Blue Shield of Massachusetts in 2001, but is a separate organization with its own board of directors.) Catalyst Fund grants assist with one-time expenses needed to strengthen an organization’s ability to fulfill its mission, or enhance the capability of an organization to respond to a medical emergency.
“The mission of the Blue Cross Blue Shield of Massachusetts Foundation is to expand access to health care,” said Anya Rader Wallack, Interim President of the Blue Cross Blue Shield of Massachusetts Foundation. “These one-time operating grants to community-based organizations support the heart of that mission.”
The following organizations recently received Catalyst Fund grants:
Geiger Gibson Community Health Center of Dorchester was awarded $1,700 to send its director of nursing for training with the National Center for Quality Assurance. This training will help the community health center, which is participating in a demonstration medical home initiative organized by the Massachusetts League of Community Health Centers, become a patient-centered medical home.
Inflammatory Breast Cancer New England Region of Holbrook was awarded $3,500 to hire a designer to build a website for the organization. The website will be used to disseminate information about inflammatory breast cancer, a rare form of cancer that first presents with relatively benign symptoms, to patients and providers.
Interfaith Social Services of Quincy was awarded $2,250 to purchase an Automated Electronic Defibrillator and train staff in its use..
The Joint Committee for Children’s Health of Holden was awarded $3,500 to purchase four computers, a printer, and all-in-one copier, printer, scanner, and fax machine. This equipment will replace out-dated computers and will allow staff to do onsite outreach and enrollment in public health plans in schools, churches, businesses, and other community sites.
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More about the Blue Cross Blue Shield of Massachusetts Foundation
The mission of the Blue Cross Blue Shield of Massachusetts Foundation is to expand access to health care. Through grants and policy initiatives, the Foundation works with public and private organizations to broaden health coverage and reduce barriers to care. It focuses on developing measurable and sustainable solutions that benefit uninsured, vulnerable and low-income individuals and families in the Commonwealth, and served as a catalyst for the pioneering Massachusetts health care reform law passed in 2006. The Foundation was founded in 2001 with an initial endowment of $55 million from Blue Cross Blue Shield of Massachusetts; the endowment has since grown to $108 million. The Foundation operates separately from the company and is governed by its own 18-member Board of Directors. It is one of the largest private health philanthropies in New England and in 2007 was awarded the Paul Ylvisaker Award for Public Policy Engagement by the Council on Foundations.