About the Networking Group
A networking group for women with IBC in New England meets regularly in Milton, Mass. The group provides a venue for women to share experiences and information face-to-face. The group also features a professional speaker on occasion. Past speakers have discussed clinical trials, lymphedema, relaxation techniques and nutrition.
Launched in 2001, it was the first networking group for women in New England, providing regular meetings.
The IBC group is peer-led and coordinated by group founder, and IBC survivor, Sue Asci.
Meetings are scheduled quarterly, typically on a Saturday, from 10 a.m. to noon. There is no charge, but participants need to RSVP and should contact Sue at 781-447-0848
2021 Update: In the fall of 2021, the group is starting a series of Zoom meetings. Contact Sue for more information and to sign up to participate. Since the pandemic, the group introduced a series of outdoor, face-to-face meetings in the summer months. Those meetings will resume when interest level returns.
History
The networking group was founded in 2001 in the Boston area.
While there are numerous support groups and services for women with breast cancer, none existed that specifically addressed the needs of women with a diagnosis of inflammatory breast cancer.
Facing a diagnosis of IBC can present unique challenges. As a rare disease, very little research has been done and there is not a lot of information published about the disease for patients or caregivers. Also, the treatment tends to vary as there is no standard protocol for treating IBC.
Many patients report some feelings of isolation, which led to the creation of the networking group.
The first meeting was held in December 2001 in Framingham. More than 15 women attended, representing five of the New England states. One participant joined the meeting via speaker phone.
Some women drove in excess of four hours just to sit at a table and meet with other women with the same disease.
The need was clear.
Since that time, the group has grown and met regularly for a number of years in Worcester and in Newton, MA.
The group has been peer-driven and offers general support. Women also communicate throughout the year via email, telephone and occasional social gatherings.