In December 1996, an e-mail list was introduced focusing on education and emotional support for inflammatory breast cancer patients, their friends and families. That e-mail list and website remains and is known as IBC Support, owned and operated by Pete Bevin in Toronto, Canada.
In 1998 advocacy for meaningful research directed specifically at IBC was begun by a group of those who met via the IBC Support List. This small group started the IBC Research Foundation e-mail list. By 1999 that fledging effort resulted in the incorporation of the non-profit Inflammatory Breast Cancer Research Foundation, a tax-deductible 501(c) (3) corporation. Please read the mission and goals.
The IBC Research Foundation conducts its business and pursues its mission and goals in the latest 21st Century cyber fashion — with no real estate, no building space with high rents, no paid consultants, and with volunteers all over the country working out of their home or their own computer. Only our Executive Director receives any compensation. We use the Internet to increase the awareness of IBC and its symptoms through our website. We use e-mail lists to connect the geographically wide-spread group of volunteers pursuing the mission and goals of the Foundation. Those same volunteers distribute many thousands of brochures throughout North America each year. We provide a nationwide toll-free telephone number (1-877-stop-IBC or 1-877-786-7422) for those seeking a direct connection with a human being or without internet access. We also attend many cancer conferences, mini-conferences, and symposiums each year to remain current with research and researchers, introducing many of them to the most aggressive breast cancer, IBC, while encouraging these researchers to include IBC biospecimen samples and/or patients in their research.
