An Incomplete History
A community for sharing information and support about brain tumors and related conditions…
In May 1993, during her own quest for information and support, Samantha Jane Scolamiero, a brain tumor survivor, developed the first online support group about brain tumors on the Internet called “the BRAINTMR mailing list.” This free, volunteer run service is an international forum whose membership grew exponentially until 1996 where it reached a plateau of 1400. With the addition of many other groups, the BRAINTMR list serves about a thousand members daily. Members are brain tumor patients, caregivers, health care professionals, and/or researchers; some subscriptions represent extended families, entire face-to-face support groups and renowned research clinics.
As early as 1995, The BRAINTMR mailing list began “making news.”
The BRAINTMR list was featured in a think-tank style report about "An Epidemic of Health on the Internet," discussing how it's possible to improve health using the Internet.
“It is possible to create an epidemic of health,” said Jonas Salk.[1] The convergence of the Internet, global communications, and medical technology have created an environment from which dramatic new advances in health care and enhancement may emerge. … The BRAINTMR Internet support group, for example, was started by a young woman who had a brain tumor successfully removed. As a survivor of this traumatic experience, she is a powerful communicator to a group of People facing similar problems. This group of 600 People from all over the world “meets” via electronic mail and shares their experiences and emotional ups and downs as they struggle with this common problem. The group simply emerged: it has no formal sponsorship or funding".
—US Medicine Magazine, August 1995
T.H.E. BRAIN TRUST was incorporated in March 1997 in order to seek funding to:
1. Maintain, improve and expand The BRAINTMR
mailing list
2. Build an infrastructure so that new
online support groups could be created
3. Promote awareness about these services
Personal expenditures by volunteers who provided various support services for the BRAINTMR list could not continue indefinitely, particularly because some of these volunteers are disabled, low-income brain tumor survivors. The true grassroots nature of this Organization makes it unique.
The BRAINTMR list was recognized with a “Health Online Distinguished Achievement Award” in 1996, and was featured in Dr. Warner Slack's Book Cybermedicine in 1997 and has been mentioned in Newsweek and the Wall Street Journal.
The BRAINTMR list has served as a model for similar online groups run by People with allergies, epilepsy, cancer, cerebral palsy, and scores of other conditions.
T.H.E. BRAIN TRUST and our online communities have served as a proactive voice supporting the evolved role of patients as participants in their own treatment. In the past, doctors gave orders and patients complied. Today, informed patients have the tools to seek out the same journals, research studies, specialists, and other resources used by their doctors. With the impact of technology and improved communication, the balance of power is shifting.
