The Meningioma Project

While the halls of Brigham and Women’s Hospital are always bustling with patients, doctors and staff, like elsewhere in the world, the steady traffic seems to slow at this time of the year as people stop to appreciate one of the hospital’s many towering Christmas trees, or winter scenes, or to fuel up on the seasonal candy jars, which are incessantly tempting.

And like those shoppers on the busy city sidewalks, hospital pedestrians bear packages too, to inspire a “get well” to those recovering or express a “thank you” to the many hospital employees committed to bringing the holidays to the thousands of patients that won’t be home this year.

But how does the magic of the season change for a patient facing a frightening diagnosis, like a brain tumor? Myself, a lucky survivor of a tumor of the CNS, I believe the holiday wish of many patients may very well be the return to a sense of normalcy, which not surprisingly, at this time of the year, comes in the ability to give.

Recently, a patient confirmed my thoughts. While leaving the hospital gift shop she pointed out that “being stuck in the hospital over Christmas wouldn’t stop her from having a surprise up her sleeve” for her many grandchildren that will be stopping by. 

Evidently, this insatiable desire to give is the same spirit behind the wonderful social networks, organizations and foundations like the Brain Science Foundation, incepted and supported by patients committed to the joint action of rising and uniting a community and furthering a cause. In my short time supporting the communications needs of the Brain Science Foundation and the BWH Dept. of Neurosurgery, I have just begun to appreciate the greater impact of this relationship beyond its primary purpose of advancing research into primary brain tumors. The dynamic of support, focus and urgency that binds together researchers, doctors, caretakers, patients, donors and the greater staffs at both organizations is a beacon to all involved in this fight against brain tumors. I think I speak on behalf of all of my colleagues when I say, like the holidays, unity and healing is truly what the BSF is about.

With Thanksgiving just behind us and the start of the holiday season in our sight, it seems an appropriate time to take a breath and review some of the successes we’ve seen with The Meningioma Project.

The project is just over a month old and already more than 100 people have joined in the effort. By joining, they are showing their support for the pursuit of new technology and more research money to battle meningiomas. They back our desire for stronger partnerships and information-sharing to help meningioma patients. That so many of you are interested in our work is heartening, and we are grateful.

We’ve got some other good news to report: Meningioma Mommas, an online support group for meningioma survivors, is that much closer to its goal of donating $1 million toward meningioma-related research.

The group’s recent $10,000 donation, presented by Liz Holzemer, a BSF Board Member and founder of Meningioma Mommas, is greatly appreciated. It comes at a crucial time, as the National Institutes of Health has cut all grant recipients’ funding by 29 percent. The money will support the Meningioma Consortium Study, Dr. Elizabeth Claus’s national study into the causes of meningioma.

If you aren’t already aware of Meningioma Mommas, be sure to check out their website. We’re sure you’ll like them as much as we do.

I had never even heard of a meningioma (men ing gee oh ma) before I joined the Brain Science Foundation as its Executive Director a year ago. Now I know that meningiomas are the most common of all primary brain tumors, which are tumors that originate in the brain versus tumors that metastasize from cancers in other parts of the body.

I also know that it is estimated that currently 1 in 1,000 people in the United States have a meningioma diagnosis. Yet, despite these facts, there is little public awareness or medical community focus on this tumor type. Perhaps this is because 80-90% of all meningiomas are classified as benign and many patients have a good prognosis if their tumors are successfully removed. Perhaps it is because brain tumors are considered an “orphan” disease and because more than 120 types have been identified. Even within the meningioma classification there are three grades and nine subtypes. Perhaps it is because brain tumors and brain cancers represent under funded areas within cancer research.

Whatever the reason(s), I know the Brain Science Foundation is committed to filling this void in meningioma awareness, knowledge and treatment in the medical community and beyond.

The Brain Science Foundation, in its partnership with the Brigham and Women’s Hospital in Boston, is proud to announce the launching of The Meningioma Project, the premier resource devoted entirely to the fight against meningioma. The Meningioma Project seeks to:

• Promote innovative thinking, new technology and increased collaboration
• Raise funds for research, specifically targeting meningiomas
• Share state-of-the-art information widely with scientists, doctors, patients, advocates and donors
• Build partnerships to help patients and survivors live longer, fuller lives

My first year with the Brain Science Foundation has been an incredible learning experience. I knew from my previous work experience how challenging it can be to raise money for scientific research, especially for translational research that seeks to move basic scientific discovery from the lab to the clinic. I was initially impressed with the Brain Science Foundation’s unique model as a supporting organization to the Brigham and Women’s Hospital, which has facilitated the channeling of significant resources to build up a multi-disciplinary approach to fighting meningioma at the Meningioma Center of Excellence. After this year, I can appreciate more deeply the importance of this innovative model to the effort of eradicating meningioma either through a cure or a 100% effective treatment.

What I could not have anticipated were the amazing people that I would meet on both the patient and caregiver side of the meningioma equation. I am constantly impressed by the scientists, doctors, fellows and staff who work tirelessly to care for people facing brain tumor diagnoses. I am equally impressed by the number of expert clinicians who are dedicated to research as well as caregiving. They know that unless they can understand the causes and the biology of these tumors better, existing treatment will not cure these patients. Then there are the people who have lived through meningioma diagnosis. I have had the privilege to get to know a number of people who are journeying on with their lives post meningioma.

My first year of education at the Brain Science Foundation would have been woefully incomplete without the opportunity to learn from these many, courageous and resilient people. It’s hard not to sound trite when speaking about the people who have shared their stories with me and continue to share how their lives have been forever changed by their meningioma diagnosis and treatment. They are all very different people from all walks of life. What links these folks together for me is not simply their overarching diagnosis, but their common desire to contribute to learning more about meningioma and its causes to expedite more sophisticated diagnostics, less invasive treatments and ultimately a cure for this disease. I have learned from these people that nothing that grows in your brain that should not be there is “benign.” I have learned that even if you are lucky enough to have a total resection of your tumor, your quality of life may be forever changed by deficits you may have suffered as a result of the tumor and/or treatment. I have also learned that because it is not possible to predict or prevent recurrent growth of a meningioma, people who have survived meningioma treatment most often need to monitor their health status for life. Many of these people have contributed to The Meningioma Project by allowing us to interview them for The Meningioma Project website (to read more go to the personal stories section).

As we launch The Meningioma Project, we invite all interested parties: patients, survivors, co-survivors, doctors, scientists, and donors of all kinds to join us in our efforts to actively work toward eliminating meningiomas. The Meningioma Project is a living project and it will grow and evolve as people from all communities get involved. We welcome your participation in whatever form is comfortable for you. You may wish to peruse our website and the clearinghouse of information we have compiled about meningiomas. You may wish to get on our mailing and/or email lists so we can keep you up to date with all that is happening with The Project.

Regardless of how you choose to connect with The Meningioma Project, I would be remiss if I did not point out that without funding our fight comes to a standstill. Please consider making a gift to The Meningioma Project by giving directly online or by sending your contribution to the Brain Science Foundation, 277 Linden Street, Suite 207 Wellesley, MA 02482. We also invite you to contact us via email at info@brainsceincefoundation.org or call us toll-free at 866-492-2466.