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| Dr. Peter M. Black in the operating room. (Photo by Stu Rosner) |
The Meningioma Project was established as a joint partnership between the Brain Science Foundation and the Brigham and Women’s Hospital. The reach of The Project is extended beyond these founding organizations through a number of collaborations that have been developed with key partners.
As The Meningioma Project grows and becomes more widely known, it seeks to include other interested individuals, groups, organizations and institutions (parties) as appropriate to join the effort to effect change around meningioma awareness, knowledge and treatment in the medical community and beyond.
The Brain Science Foundation’s focus and strength is channeling resources to promote innovative seed projects in meningioma basic science and clinical research. Our goal is to eliminate meningioma through a 100% effective treatment or a cure. Yet, we know that the human dimension of this disease must be given proper attention too. To this end, we have established partnerships with two, unique patient and survivor support organization who serve meningioma patients and their caregivers on a global scale.
Meningioma Mommas
In addition to providing an online support group for all those affected by meningioma brain tumors, Meningioma Mommas has partnered with the Brain Science Foundation and the Brigham and Women's Hospital to help raise awareness of meningiomas and to advocate for an improved quality of life for all meningioma patients and survivors. Further, Meningioma Mommas has committed to raising $1 million to advance meningioma-related research. To date, the organization has provided $85,000 to the Brain Science Foundation specifically for the epidemiological research that Dr. Elizabeth B. Claus and her colleagues have conducted. This designated support started when the Meningioma epidemiology study was a BSF seed project and has continued to fill the gap between the requested grant proposal and the approved NIH funding level of this project now that it is a multi-year, multi-site federally funded study. Meningioma Mommas Founder and President Liz Holzemer is a Trustee of the Brain Science Foundation.
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 currently 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.
This model allows the goals of the The Project to impact the work at other institutions through affiliations and collaborations.
Dana-Farber/Brigham and Women's Cancer Center
Dana-Farber/Brigham and Women's Cancer Center, a cornerstone to The Meningioma Project, is a unique collaboration between BWH and the Dana-Farber Cancer Institute. This alliance of powerful resources has yielded one of the world's largest multidisciplinary brain tumor programs committed to conquering meningiomas and other brain tumors through novel therapies and techniques for screening and prevention. As part of this affiliation, The Brain Science Foundation has funded Dr. Charles Stiles, Ph.D., a professor of Microbiology and Molecular Genetics at Harvard Medical School and Deputy Director of the Mahoney Center for Neurooncology at the Dana-Farber Cancer Institute, for his Kinase Mutations in Meningiomas project.
Genetics Institute, Paris
The lack of a viable animal model is a rate limiting step to advancing the understanding of the biology of meningiomas. Dr. Rona Carroll, Ph.D., Associate Director of the Neurosurgical Oncology Laboratory in Neurosurgery at Brigham and Women’s Hospital and Assistant Professor of Surgery at Harvard Medical School, and her team have been working with Drs. Marco Giovannini and Michel Kalamarides in Paris, France, on the Meningioma Model Project. The French group created the first transgenic mouse model of meningioma and have concluded that mutation in the Nf2 gene is an early step in meningioma development. To read more about this project and the collaboration with Drs. Giovannini and Michel Kalamarides, click here.
University of Haifa, Israel
In collaboration with Dr. Marcelle Machluf, a bioengineer at the Technion University in Haifa, Israel, Dr. Carroll’s group is working to develop new local delivery methods for the treatment of brain tumors. These studies employ PEX, a powerful antitumor agent which is encased in a polymer and when placed in the surgical cavity will slowly degrade and release PEX into the tumor site and inhibit tumor growth. To read more about this project, please click here.
Central Brain Tumor Registry of the United States
The Central Brain Tumor Registry of the United States, CBTRUS, is a non-profit corporation committed to providing a resource for gathering and disseminating current epidemiologic data on all primary brain tumors, benign and malignant, for the purposes of accurately describing their incidence and survival patterns, evaluating diagnosis and treatment, facilitating etiologic studies, establishing awareness of the disease, and, ultimately, for the prevention of all brain tumors. The Brain Science Foundation has worked with CBTRUS founder and current President and Administrator, Carol Kruchko, and her staff, and has been consulting with CBTRUS on a regular basis to provide the most current and accurate data and statistics regarding meningioma as an integral component to The Meningioma Project.
Nancy Conn-Levin
Nancy Conn-Levin is a health educator specializing in brain tumor issues. As a meningioma survivor herself, she has been a guest speaker and participant at national and regional brain tumor conferences across North America since 1996. By integrating her professional expertise with her personal experience, she is able to offer practical information and encouragement to others who are coping with brain tumor-related issues. Ms. Conn-Levin is the author of patient-education materials and resources for health-care professionals. She has been instrumental in co-producing a number of educational materials for the Brain Science Foundation and The Meningioma Project. In 2003, Ms. Conn-Levin co-founded the Monmouth and Ocean County Brain Tumor Support Group, Inc. in New Jersey. She is co-facilitator of this active support group, which provides direct support to people affected by any type of brain tumor.
Barbara F. Bass, Ph.D.
Barbara F. Bass, Ph.D., is an environmental consultant with over 30 years of experience working on environmental issues from a scientific, regulatory, and policy perspective. Her work has included areas involving toxic chemical use and release into the environment, risk assessment of exposure to toxic substances, and environmental data reporting and evaluation. More recently, Dr. Bass, who is a meningioma survivor, has applied her scientific training as a toxicologist specializing in the nervous system and her professional skills to furthering the cause of research and patient education involving brain tumors. She has performed work for government agencies, non-profit organizations, foundations, and citizens' groups.
