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)