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.
IBC-NE profiled in the Holbrook Sun
Posted on 09. Jan, 2010 by ibcneco1 in News, Uncategorized
The following article appeared in The Holbrook Sun, October 16, 2009
Grant awarded to breast cancer organization based in Holbrook
A newly founded non-profit organization based in Holbrook, Inflammatory Breast Cancer New England Region, Inc., was recently awarded a grant to help it with its mission.
“The mission is to provide education, promote understanding and build awareness about inflammatory breast cancer; serve as a resource for patients and caregivers, and help support the networking group,” said Susan Asci, founder and president of the organization.
Asci was 39 when she was diagnosed with inflammatory breast cancer (IBC) in the fall of 2000.
At first she noticed a rash on her breasts before her other symptoms, swollen breasts and thickening of the skin, happened overnight.
Asci had always thought that in order to have breast cancer, there had to be a lump.
Since her mother and grandmother were both breast cancer survivors, Asci believed that she already knew plenty about that type of cancer, she said.
Due to her family history, Asci had been getting annual mammograms for 10 years.
When she went to see her doctor and had a biopsy, she was surprised that the diagnosis was a form of breast cancer.
“It’s virtually undetected by mammography,” Asci said.
After undergoing multiple rounds of chemotherapy, she underwent a double mastectomy, but the cancer was still present.
Asci then had an autologous stem cell transplant with a high dose of chemotherapy and was hospitalized for a month in order to receive the treatments.
This was followed with about five weeks of radiation.
During her almost one-year battle with IBC, Asci promised herself that she would help spread the word about this form of breast cancer.
She has been in remission since 2001.
By December, 2001 Asci founded an IBC networking group, and in 2002 she helped to launch the Inflammatory Breast Cancer Initiative at Tufts Medical Center by raising $50,000.
Dr. Donald Lawrence, Asci’s oncologist, and Dr. John Erban, are the founders of the project, but have since left Tufts Medical Center.
Last December, Asci started to form the new non-profit, and by March, it received its 501 (c) 3 status as a public charity, which allows it to receive tax-deductible donations.
The board members of Inflammatory Breast Cancer New England Region, Inc. are Pamela Seymour, CPA; James Brett, president and chief executive of The New England Council; Dr. Jack Erban, clinical director and co-director of the Gillette Center for Breast Cancer at Massachusetts General Hospital; Ann Brady, R.N.; Richard Armstrong, attorney; Charles Tevnan, attorney with the Tevnan and Tevnan law firm; Denise Doherty of Dorchester; James Hunt, president and chief executive of the Massachusetts League of Community Health Centers; Robert Sheridan, president and chief executive of Savings Bank Life Insurance; and Joseph Leary, executive director of the Irish American Partnership.
A capacity building grant from the Catalyst Fund for $3,500 was recently awarded to the organization.
The Catalyst Fund is administered by the Blue Cross Blue Shield of Massachusetts Foundation and funded entirely with donations from employees of Blue Cross Blue Shield.
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.
With the grant, Inflammatory Breast Cancer New England Region, Inc. will establish a website for the organization that will disseminate information for patients and providers about IBC.
The website should be up and running by the end of the year, Asci said.
According to the National Cancer Institute, inflammatory breast cancer is “a rare but very aggressive type of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast. This type of breast cancer is called ‘inflammatory’ because the breast often looks swollen and red, or ‘inflamed.’
“IBC accounts for one to five percent of all breast cancer cases in the United States. It tends to be diagnosed in younger women compared to non-IBC breast cancer.”
The IBC New England networking group, the group Asci started, continues to meet on a quarterly basis in Newtonville. In January, they formed a partnership with the former Wellness Community, now known as Facing Cancer Together.
Meetings are facilitated by professional social workers.
For more information about this group, which provides programs for people with all types of cancer, call 617-332-5777 or visit www.wellnesscommunity.org/.
Those interested in donating can make checks payable to the Inflammatory Breast Cancer New England Region, Inc,. and the mailing address is P.O. Box 850303, Braintree, MA 02185.
Those interested in more information about the organization can contact Sue Asci.
(Reprinted with permission from The Holbrook Sun)