State marks first IBC Awareness Day
Posted on 21. Dec, 2023 by ibcneco1 in News
(Boston — December 21, 2023) — The state marked the first Inflammatory Breast Cancer Awareness Day with a series of events and a proclamation.
Members of the IBC board of directors, partners and policy makers met at the State House to mark the day. Representative Sean Garballey spoke about the significance of the event and presented a proclamation signed by Governor Maura Healy.
Representatives Joan Meschino and Vanna Howard also participated in the program.
The IBEW Local 103 in Dorchester displayed a message on their digital billboard on Route 93 announcing IBC Awareness Day. Thanks to assistance from Denterlein Communications, the day received a significant amount of media coverage.
Programs actually began in the summer and fall leading up to the day, October 10. Tufts Medical Center hosted an educational table distributing information about inflammatory breast cancer. Table displays were also set up in health centers and libraries in Boston and the north shore.
Community crafting programs brought together crafters with IBC survivors to share information about IBC. The resulting donation of more than 120 chemo hats for breast cancer patients were presented to Tufts Medical Center and Beth Israel Hospital. Participating knitters were: Ina Pratt, Kathy O’Brien, and Catherine Hocker of Whitman, from the Council on Aging; Stitch House in Dorchester, Wicked Good Yarns in Braintree, and Auntie Zaza Fiberworks in Easton. A number of individual knitters, including supporter Stephanie Fall, also donated.
In addition, another group of crafters organized by Rene Taber of Milton created more than 60 heart pillows for women undergoing breast surgery. Thanks to all who donated their time, guidance, and crafts.
Planning for 2024 has already begun. For more info on how to get involved, contact Sue at 781-447-0848.
Crafting events planned for IBC Awareness Day
Posted on 13. Aug, 2023 by ibcneco1 in News
Stitch House to hold crafting events in September
Dorchester (August 11, 2023) – The Stitch House yarn shop in Dorchester will hold two knit-along events in September to create and collect chemo hats for a donation to the Breast Health Center at Tufts Medical Center in Boston in recognition of Inflammatory Breast Cancer Awareness Day.
Crafters are welcome to participate and join others in making knit or crochet hats for patients undergoing treatment for breast cancer at Tufts.
The events will be held Friday, September 15 from 6:30 to 8:30 p.m., and Sunday, September 24, from 4:30 to 6:30 p.m., at the shop, 846 Dorchester Avenue. IBC survivors will be in attendance to share information and educational materials.
In January, the legislature approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC). The first IBC Awareness Day will be October 10, 2023.
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Most women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
The bill was proposed by IBC New England Region, a charitable, non-profit organization dedicated to supporting awareness and education about IBC as well as resources for patients. Learn more at our website, ibc-ne.com.
Several yarn shops on the south shore have also engaged their knitting/crochet groups in the project and are making hats including Wicked Good Yarns, 871 Washington St., (first floor, rear), in Braintree, and Auntie Zaza’s Fiber Works, 104 Main St, North Easton. Crafters may also visit these locations to find out more about making hats and donating them. In addition, the Whitman Council on Aging Knitting Group is making hats.
“Our goal is to collect 100 hats by the end of September for the donation,” said Susan Asci, 22-year IBC survivor and founder of IBC New England. “Community crafting is a great way to get people together to share the experience of creating and donating to others. It’s an opportunity to talk, answer questions, and share information with our friends, family, and neighbors.”
For more information visit the Stitch House, Wicked Good Yarns, or Auntie Zaza’s Fiber Works, or call Susan Asci at 781-447-0848.
Chemo Hats for Inflammatory Breast Cancer Awareness Day
Posted on 13. Aug, 2023 by ibcneco1 in News
Boston (August, 2023) – From the north shore to the south shore, dozens of crafters are making knit and crochet chemo hats to be donated to the Breast Health Center at Tufts Medical Center in Boston in recognition of Inflammatory Breast Cancer Awareness Day.
In January, the legislature approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
Several yarn shops in the area have engaged their knitting/crochet groups in the project and are making hats including Wicked Good Yarns, 871 Washington St., (first floor, rear), in Braintree, and Auntie Zaza’s Fiber Works, 104 Main St, North Easton. Crafters may visit the shops to learn more, pick up some yarn and drop off donations. In addition, the Whitman Council on Aging Knitting Group is making hats.
In Dorchester, the Stitch House, 846 Dorchester Avenue, has announced two knit-along events in September to create hats for the project. The events will be held Friday, September 15 from 6:30 to 8:30 p.m., and Sunday, September 24, from 4:30 to 6:30 p.m. Crafters are welcome to attend this event, learn about IBC, and meet new friends. IBC survivors will be in attendance to share information and educational materials.
There are also many individual knitters from the north and south shore who are creating hats for the donation.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC).
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Most women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
The bill was proposed by IBC New England Region, a charitable, non-profit organization dedicated to supporting awareness and education about IBC as well as resources for patients. Learn more at our website, ibc-ne.com.
“Our goal is to collect 100 hats by the end of September for the donation,” said Susan Asci, 22-year IBC survivor and founder of IBC New England. “Community crafting is a great way to get people together to share the experience of creating and donating to others. It’s an opportunity to talk, answer questions, and share information with our friends, family, and neighbors.”
For more information visit the Stitch House, Wicked Good Yarns, or Auntie Zaza’s Fiber Works, or call Susan Asci at 781-447-0848.
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Dana Farber sets Annual Patient Forum
Posted on 25. Feb, 2023 by ibcneco1 in News
Dana Farber’s Inflammatory Breast Cancer Program is hosting its sixth annual Patient Forum on Saturday, April 1, 2023. This free, virtual event will offer attendees the chance to learn the latest patient-focused scientific information in inflammatory breast cancer treatment and survivorship.
The program will include two separate events held via Zoom.
The events are:
- Welcome and educational sessions
- For patients, families, and loved ones: IBC Social Work Group.
Educational presentations include topic such as surgery, facing anxiety with an IBC diagnosis and beyond, and immunotherapy. A round table discussion will focus on research and several clinical trials underway as well as open clinical trials.
A special social work discussion will be led by Julie Salinger, MSW, LICSW. This event requires pre-registration and space is limited, so register soon.
To request more information, contact DFCI_IBC@DFCI.harvard.edu. Or call 617-632-2311.
IBC Awareness Day Enacted
Posted on 12. Jan, 2023 by ibcneco1 in News
January 12, 2023
Inflammatory Breast Cancer Awareness Day established in Massachusetts
Governor Charlie Baker signed the bill into law on his final day in office
BOSTON (January 12, 2023) — The legislature last week approved a bill establishing a permanent Inflammatory Breast Cancer Awareness Day in Massachusetts. Governor Charlie Baker signed the bill into law on his final day in office.
The bill designates the second Tuesday of October as a permanent day to recognize and promote education about inflammatory breast cancer (IBC).
IBC is an aggressive form of breast cancer. IBC accounts for about one to 5% of all breast cancers, and a disproportionate number of life years lost. Many women diagnosed are under the age of 40. The disease is also the least understood type of breast cancer.
“Having a dedicated day to educate and increase awareness about this disease will do so much to offer hope and support for patients and help encourage more research,” said Susan Asci, of Whitman, a 22-year IBC survivor and founder of IBC-New England Region Inc., the charitable non-profit organization that initiated the proposal. “Receiving a cancer diagnosis is devastating. When you have a rare disease that has not been widely studied, it can make the diagnosis even more challenging and isolating. Often patients and their families have never heard of IBC.”
“I am so pleased that the legislature approved the bill and Governor Baker made it a permanent day in Massachusetts,” said Jim Brett, president of The New England Council and a founding board member of IBC-New England. Jim is a long-time supporter of resources and education for patients with IBC. “It has been inspiring to be part of this group of friends, providers, and caring professionals trying to make a difference for patients with IBC. One thing is clear: Hope is a powerful force, especially for people fighting a serious illness. And this Awareness Day is an important tool is sharing information and building hope.”
Representative Sean Garballey (Arlington), who is a board member of IBC-New England, sponsored the bill in the House and led the effort to advance it.
“I am honored to be part of this effort to help people who have been suffering from this disease. Having an awareness day is important in the fight against cancer. Setting aside this day is an opportunity to shine a light on this health issue and educate people more about this disease,” Sean Garballey said. “It’s an opportunity for advocates and health care providers to educate and inform. Information is an important part of quality health care.”
Symptoms of IBC are atypical and there is not generally a lump present. The cancer is virtually undetectable with standard mammography. Instead, most patients see a rapid onset of swelling and skin changes. Patients need to seek treatment as soon as possible. Often the disease is diagnosed at an advanced stage.
Funding research for rare cancers can be challenging. Less than 10% of clinical trials nationally include women with IBC. In New England, there are several cancer centers that are working to change the landscape for research. Dana Farber, for example, has a dedicated IBC program and is leading several clinical trials.
There are also more opportunities for peer support for patients and networking in the region. In 2001, Asci formed a networking group for women with IBC in the Boston area. Dana Farber also has a support group that provides education for IBC patients.
The awareness day provides an opportunity for providers, cancer centers, and patient organizations to hold educational events for the public, patients and their families. These activities may include presenting and distributing information about IBC, services, and resources.
“It will mean so much to patients with IBC, and their families and caregivers, to know that more people are looking at this disease, talking about it, and trying to understand it,” Asci added. “Knowledge is power. And the more we share, the more people we can help.”
For more information about IBC New England, and this effort, see the organization’s website, ibc-ne.com or call Susan Asci at 781-447-0848.
See the link to State House website for passage of the bill:
https://malegislature.gov/Laws/SessionLaws/Acts/2022/Chapter359(Note: the headline reads the first Tuesday, but the actual date is the second Tuesday, as reflected in the body of the text)
Dana Farber offers support and education programs
Posted on 23. Oct, 2022 by ibcneco1 in News
October 23, 2022 (BOSTON) — The Dana Farber Cancer Institute’s Inflammatory Breast Cancer program offers an education and support series for individuals with IBC. Each meeting includes an educational presentation followed by a support group discussion facilitated by Julie Salinger, MSW, LICSW.
The series is virtual. A recent session was held in early October. For more details about upcoming meetings and the schedule for 2023, contact Julie Salinger at JulieL_Salinger@DFCI.harvard.edu or Mariesa Powell at MariesaD_Poell@dfci.harvard.edu.
New grant funds research at Dana-Farber to advance diagnosis of inflammatory breast cancer
Posted on 23. Oct, 2022 by ibcneco1 in News
October 23, 2022 (BOSTON)– Susan G. Komen, the world’s leading breast cancer organization, awarded a research grant to apply a new, first-of-its-kind tool that seeks to more accurately diagnose inflammatory breast cancer (IBC). The grant funds collaborative work being done at Dana-Farber and The University of Texas MD Anderson Cancer Center.
World-renowned breast cancer clinicians Filipa Lynce, MD, Director of the Inflammatory Breast Cancer Center at Dana-Farber, and Wendy A. Woodward, MD, PhD, at MD Anderson, are building off findings from the Susan G. Komen-IBCRF IBC Collaborative, in partnership with the Milburn Foundation, that were recently published in Breast Cancer Research and Treatment. The research team’s work will involve the application of a scoring system to increase diagnostic accuracy, predict outcomes, guide treatment decisions and identify criteria for inclusion in clinical trials. The scoring system uses a set of common diagnostic criteria to differentiate between patients who definitely have IBC, have a strong possibility of IBC or have a weak possibility of IBC. Upon confirming the scoring system’s accuracy, it could then be applied prospectively to patients.
IBC has historically been difficult to diagnose because it does not often present as a lump in the breast rather it appears as swelling or redness in the breast. Diagnosis is often delayed, misdiagnosed or missed. By the time IBC is detected, the cancer has already spread to other parts of the body and has become incurable in 30 percent of patients.
“An IBC diagnosis is very dependent on a provider’s experience, which is not acceptable because patients should receive the same care, regardless of where they live and where they seek care,” said Lynce. “The tool will help to define IBC, increase diagnostic accuracy and provide data to standardize how we diagnose and treat inflammatory breast cancer.”
Susan G. Komen, the Milburn Foundation and the Inflammatory Breast Cancer Research Foundation (IBCRF) have worked cooperatively since 2016 to advance IBC research and care through innovative approaches. This grant award marks a key strategic milestone in the groups’ collective efforts, which have been supported through previous collaborative campaigns and joint efforts like the Susan G. Komen and Milburn Foundation fundraising match campaign in March 2022.
“This grant is a unique opportunity to not just validate the scoring system but also create the mechanism of collaboration that is needed to continue to develop and move IBC research forward,” added Woodward, study co-investigator. “I think this unique funding approach will offer an incredible model for how to facilitate progress in a rare subtype of breast cancer and the work will lay the foundation to accelerate research that will lead to identifying more therapies that can be used to treat IBC patients.”
“The Collaborative has brought together patients, advocates, clinicians and researchers on a singular goal – to make progress in understanding and diagnosing this disease and advance treatment options,” said Victoria Wolodzko-Smart, VP of Mission at Susan G. Komen. “The grant announced today is a crucial next step in improving outcomes for inflammatory breast cancer patients, who have long waited for a breakthrough.”
Dr. Lynce is an Assistant Professor of Medicine at Harvard Medical School and a Breast Medical Oncologist at Dana Farber Cancer Institute and serves as the Director of the Dana-Farber Inflammatory Breast Cancer Program. Dr. Woodward is a Professor and the Chief of the Clinical Breast Radiotherapy Service in the Department of Radiation Oncology at The University of Texas MD Anderson Cancer Center and serves as the Deputy Director of the Morgan Welch Inflammatory Breast Cancer (IBC) Clinic and Research Program.
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.
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.