Featuring world-renowned clinicians and investigators from across a range of disciplines, presentations were organized as part of three journey stages: education, empowerment, and inspiration. Patient testimonies comprised panels that also looked at issues specific to young people with meningioma and offered insight and advice for the family members, friends, and caregivers touched by meningioma.

Following a formal welcome by BSF Founder Steven Haley and BWH Neurosurgery Chair Arthur Day, MD, the program opened with a video that gave viewers insight into Steven Haley’s personal experience with meningioma and the subsequent mission driving the Brain Science Foundation. The video also introduced meningioma patient Kim Geller, whose journey with primary brain tumors began at a very young age. 

Stage One – Education began with a comprehensive presentation from Peter Black, MD, PhD, on the medical community’s current understanding of the causes, symptoms, treatments, and outcomes associated with a meningioma diagnosis.

With an understanding of the opponent at hand, audiences then heard from Meningioma Mommas Founder, Liz Holzemer, whose poignant perspective on her difficult journey moved the audience to laughter and tears.

Next to present was BWH neurosurgery Program Director, A. John Popp, MD, who walked attendees through the various arenas of patient care, education, and research that comprise an academic health sciences center, and their application in the care of brain tumors, specifically as they relate to innovative technology, treatments and expert multidisciplinary teams.

Clinical investigators Mark Johnson, MD, PhD, Alex Golby, MD, Edward Smith, MD, and Nathalie Agar, PhD, were next to the stage to examine the future treatment of meningioma in the era of personalized medicine. With presentations relative to their areas of research: functional brain mapping for personalized surgery (Dr. Golby), Stem Cells (Dr. Johnson), Non-Invasive Early Detection of Brain Tumors (Dr. Smith), and Mass Spectrometry for Personalized Detection (Nathalie Agar, PhD), the panel presented recent developments that are impacting meningioma diagnosis and treatment today as well as the exciting advances that will be available for patient care in the next three to five years.

Information on new molecular therapies for meningioma and current clinical trials were presented by neuro-oncologists Patrick Wen, MD, and Andrew Norden, MD,; and Joseph Madsen, MD, from Children’s Hospital Boston, wrapped up the education segment with a look at “What Children Can Teach Us about Meningioma.”

Following lunch, the program resumed with a special announcement from Meningioma Mommas Founder, Liz Holzemer, who on behalf of “meningioma mommas and poppas,” presented the BSF with a check for $20,000 to be applied to epidemiology research led Elizabeth Claus, PhD, MD.  This generous gift continues a longstanding tradition of support from Meningioma Mommas, who over the years have supported the BSF in excess of $100,000.  Dr. Claus then presented an update on the Meningioma Consortium and some of the genetic and other factors identified in meningioma development.

As part of the Stage Two - Empowerment portion of the program, health educator Nancy Conn-Levin presented on fatigue and other symptoms following meningioma treatment; following were presentations from John Chi, MD, MPH, on spinal meningioma, a topic new this year, and Dr. Peter Black on the latest surgical developments.

Also debuted at MAD 2009 was the role of neuropsychiatry in managing a meningioma diagnosis. BWH Neuropsychiatry Chair, David Silbersweig, MD, discussed the emotional responses to a brain tumor diagnosis as well as the function of the brain regions/circuits affected by the tumor and surgery. Enthusiastically received by attendees, the topic led to a dynamic and informative question and answers session, and was appropriately followed by a discussion of the role of complementary and integrative health therapies by Donald Levy, MD, of the BWH Osher Clinical Center for Complementary and Integrative Medical Therapies Center.

The afternoon drew to a close with the much anticipated brain tumor panel moderated by Debra LaFrankie, RN and various break out sessions – addressing topics that included: “The Economics of Caring for Your Meningioma", by Andrea Scanlon, RN, and Donna Dello Iacono, RN, PhD; “Whole Person Quality of Life Centric Care", by Amanda Moment, LICSW; “The Physiological and Emotional Toll of Caregiving,” by Nancy Olsen Bailey, RN, MBA; “Non-Hormonal Therapies for Menopausal Symptoms,” by Maria Yialamas, MD and "Young Adult Issues with Meningioma" by Eric Galvez, PT, DPT, CSCS.

With Inspiration as our Third Stage, attendees gathered for the Day’s final general session, the patient panel. The powerful and unique patient testimonies were reflective of the unity of the meningioma community and its capacity to ignite the world to greater awareness and the need to increase support for research that will improve treatments and quality of life. Such efforts promise to facilitate the journey for patients today and those who will face a meningioma diagnosis in the future.  

The BSF would like to thank our sponsors, our planning committee, our speakers and especially all attendees for helping to make Meningioma Awareness Day 2009 a success.  We are excited to announce that Meningioma Awareness Day 2010 will be held on October 2, 2010 at the Joseph B. Martin Conference Center at Harvard Medical School. 

We want to hear from you!  For those MAD 2009 attendees who did not have a chance to submit an evaluation, please download the form here, fill it out and mail or fax your feedback to the BSF.  Hear what others had to say on our Testimonials page.

Brain Science Foundation
148 Linden Street, Suite 303
Wellesley, MA 02482
781-239-2907