More than 140 People Turn Out for the Brain Science Foundation’s First Ever Meningioma Awareness Day
Anonymous $1 Million Donation to The Meningioma Project Launches the Day and Bolsters the Fight Against Meningioma
Over 140 people attended the first ever Meningioma Awareness Day on Saturday, May 5, at the Brigham and Women’s Hospital in Boston, MA. This daylong conference was sponsored by the Brain Science Foundation (BSF) and the Brigham and Women’s Hospital (BWH) to focus exclusively on the health issues experienced by patients of meningioma. The day was structured to present the latest advancements in meningioma research, diagnosis and treatment as well as to share the experiences and coping strategies for the challenges associated with the diagnosis of meningioma from patients, survivors, caregivers and clinicians.
The audience erupted into applause as Kristin O’Sullivan, Executive Director of the Brain Science Foundation, welcomed everyone to the first-ever Meningioma Awareness Day: A Life Commitment. O’Sullivan noted that the day was the beginning of a new chapter for those affected by meningioma and that the Brian Science Foundation - Brigham and Women’s partnership was critical in moving awareness, scientific discovery and patient care forward.
O’Sullivan discussed The Meningioma Project and explained that this initiative is the premier resource for scientists, patients, advocates and donors devoted to the fight against meningioma. Launched in October 2006, The Meningioma Project was created by the Brain Science Foundation in partnership with the Brigham and Women’s Hospital to fund meningioma research and promote meningioma awareness, knowledge and improved treatments to help patients live longer, fuller lives.
O’Sullivan made the exciting announcement that in honor of the first ever Meningioma Awareness Day, the BSF had received a $1 million gift from an anonymous donor pledged to The Meningioma Project over the next three years. She also informed the audience that a total of $85,000 had been recently given to The Meningioma Project from three major benefactors as well as contributions totaling more than $30,000 from more than 100 donors. These generous gifts put the Brain Science Foundation $1.17 million down the road to the $5 million fundraising goal over the next three years to sustain The Meningioma Project. O’Sullivan explained that continued financial support is critical.
Brain Science Foundation founder, Steven Haley, welcomed all to Meningioma Awareness Day and thanked Dr. Peter Black, Dr. Gary Gottlieb and all Brain Science Foundation and BWH staff for preparing a wonderful day and achieving part of his vision that included establishing the BSF five years ago.
Dr. Peter Black opened up the presentation portion of the day by conducting a brief Meningioma Primer designed to provide a base level of understanding about meningioma for the diverse members of the audience composed mostly of meningioma patients and survivors as well as their caregivers. Following Dr. Black was a series of scientific and medical presentations from a multidisciplinary team of clinicians and researchers at Brigham and Women's Hospital. Topics ranged from the epidemiology of meningioma, to genetic and hormonal links with meningioma, to new and novel technologies for identifying and treating meningioma. These presentations offered a wide range of information and were very well received by conference attendees. To learn more about these presentations, click here. To read about a kick-off cocktail party held the night before, click here.
In addition to the varied and informative scientific and clinical presentations, audience members were able to observe a mock tumor board in action to learn how a multidisciplinary panel of clinicians reviews brain tumor cases to determine the best course of treatment for individual patients. Attendees also heard two distinct presentations by meningioma community advocates: BSF Board Member Liz Holzemer spoke to the group about her own experiences with a meningioma and how she overcame certain challenges related to her tumor. BSF Advisor Nancy Conn-Levin provided advice and coping strategies for navigating the way through a meningioma diagnosis and adjusting to life post-surgery. Both presentations offered valuable insight and advice.
Patient Panel
Brain tumor nurses Nancy Olsen Bailey and Donna Dello Iacono also assembled a panel o
f meningioma patients and caregivers to share their stories. The audience was captivated as they listened to the personal stories of six courageous individuals. Many shared details of the events leading up to their meningioma diagnosis, their treatment and their lives post recovery. The perspective of caregivers was also intimately incorporated in the voices of this amazing panel. These personal accounts describing seemingly unique experiences resonated deeply with MAD attendees who had faced similarly poignant experiences. The patient panel provided a wonderful opportunity for the patient voice to be heard by the many doctors and researchers in attendance.
The reaction from conference attendees during and after Meningioma Awareness Day was phenomenal. Conference organizers continually heard positive comments throughout the day. Forty-five percent of those who attended the conference completed surveys, which provided valuable feedback. The overwhelming views expressed both verbally and in writing acknowledged that the day was well thought-out, well organized and nicely balanced between the science and technology and the more personal and practical presentations. A majority of people expressed that the presentations were well structured and easily understood and that the materials provided where appreciated and valuable. Participants also appreciated the planning and activities of the day that were designed to take care of the attendees such as the care packages and complimentary massages at lunch and at the end of the program during the desert bar. People also enjoyed taking the opportunity to have Dr. Peter Black’s latest book, Living With a Brain Tumor, Dr. Peter Black’s Guide to Taking Control in Your Treatment, and Liz Holzemer’s book, Curveball, When Life Throws you a Brain Tumor, signed by the authors during the lunch portion of the day.
Lastly and not surprisingly, nearly all awareness day participants commented on how wonderful it was to have this forum dedicated to meningioma patients, survivors and their caregivers. Many wonderful connections were made throughout the day; a powerful by-product of convening this group of people are the connections and learning that come from being together and having the time to hear each other’s stories. There was a buzz throughout the day as many exciting ideas for future events and collaborations were hatched, as well as a strong call for a second annual Meningioma Awareness Day.
The theme of the day was: Meningioma: A Life Commitment, as such, the Brain Science Foundation, in partnership with the Brigham and Women’s Hospital, looks forward to following up on these ideas and working them into future programming under The Meningioma Project and beyond.
