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Dr. Naren Ramakrishna, of the Dana-Farber/Brigham & Women’s Cancer Center, assesses a patient for treatment. (Photo by Larry Maglott) |
Those living with the diagnosis of meningioma — including patients, survivors, caregivers and family members — can draw from a wide range of online patient-support services that include content-rich informational sites, online communities and personal blogs. We have listed several of these resources for you to explore. Please feel free to suggest other resources that we should consider adding to this list by contacting:
The Brain Science Foundation
Telephone: 781-239-2903
Fax: 781-239-2907
Email:
info@brainsciencefoundation.orgMeningioma Mommas
Meningioma Mommas is a non-profit online support group for all those affected by meningioma brain tumors. Founded by Liz Holzemer after surviving a baseball-sized meningioma brain tumor, Meningioma Mommas provides hope, friendship and laughter to meningioma patients, survivors, caregivers and loved ones. Members may join the group by logging onto www.meningiomamommas.org. Once a person is a member, he or she may log on to participate in the conversation and information sharing of the day. Participation may include simply reading other members' postings, posting themselves and/or following up with other members on an individual basis. Many sharing comfort levels can be accommodated by this site.
The Meningioma List
The Meningioma List is an online group for anyone affected by meningiomas. This group was created in 1999 by Nancy Conn-Levin, a health educator and a 10-year meningioma survivor. Meningioma patients, long-term survivors, family members of those with meningiomas and medical professionals exchange information, support and resources through email messages delivered to members of this group. Nancy serves as a co-facilitator of The Meningioma List and is also one of the founding members of the Brain Science Foundation’s Advisory Board.
Meningioma Support and Information List
Meningioma Support and Information List is a place to post questions and answers, problems and solutions, successes and failures, hopes and support about meningioma brain tumors. The purpose of this site is to exchange information and support through a repository of links. Some of the links access technical sites for medical professionals; others direct survivors to more general information.
This site also features forums in the "Discussion" section, the "Meningioma Talk" bulletin board, the "Meningioma Chat" chat room, and "Yahoo Group: Meningioma Support and Information."
Meningioma Tumor List
This meningioma tumor list, for meningioma patients and their caregivers, is run by John Hopkins Medical Center’s Radiosurgery Department. Patients do need to have undergone radiosurgery to subscribe. The site contains general information, consultations, treatment options and resources. Look for the “Connect! Join the Meningioma List” graphic and enter your email address. You’ll receive an email confirmation.
