2016 ANNUAL REPORT We are #1in50 2016 ANNUAL REPORT 13 4 Medical Advisory Board EXECUTIVE DIRECTOR & FOUNDER PRESIDENT VICE PRESIDENT Christopher S. Ogilvy, MD Robert H. Rosenwasser, MD, FACS Robert D. Brown, MD Beth Israel Deaconess Medical Center, Thomas Jefferson University Hospital, Mayo Clinic, Rochester, MN Boston, MA Philadelphia, PA Northeast Regional Directors David J. Chalif, MD, FACS Robert M. Friedlander, MD Eric Nussbaum, MD, FACS North Shore University Hospital, University of Pittsburgh National Brain Aneurysm Center, Manhasset, NY Medical Center, Pittsburgh, PA St. Joseph’s Hospital, St. Paul, MN Carlos David, MD Steven L. Giannotta, MD Aman Patel, MD Lahey Hospital and Medical Center, Keck Medicine of USC, Massachusetts General Hospital, Burlington, MA Los Angeles, CA Boston, MA Southeast Regional Directors L. Fernando Gonzalez, MD Christopher Putman, MD Daniel Barrow, MD Duke University Medical Center Inova Fairfax Hospital, The Emory Clinic, Atlanta, GA Durham, NC Falls Church, VA Jacques J. Morcos, MD, David M. Greer, MD, MA, FCCM, FAHA Andrew J. Ringer, MD FRCS (Eng), FRCS(Ed) Yale University School of Medicine, Mayfield Clinic for Brain & Spine, University of Miami Health System, New Haven, CT Cincinnati, OH Miami, FL Murat Günel, MD, FACS Joshua Seinfeld, MD Midwest Regional Directors Yale University School of Medicine, University of Colorado Hospital, Sepideh Amin-Hanjani, MD, FACS New Haven, CT Aurora, CO University of Illinois at Chicago, Chicago, IL Brian L. Hoh, MD, FACS, FAHA, FAANS Avi Setton, MD University of Florida, McKnight Brain North Shore University Hospital, Paul J. Camarata, MD, FACS Institute, Gainesville, FL Manhasset, NY University of Kansas Medical Center, Kansas City, KS Brian T. Jankowitz, MD Adnan H. Siddiqui, MD, PhD UPMC Presbyterian, University at Buffalo Neurosurgery, West Regional Directors Pittsburgh, PA Buffalo, NY Bob S. Carter, MD, PhD University of California San Diego Sucheta A. Kamath, MA, BC-NCD, CCC Robert J. Singer, MD Medical Center, San Diego, CA Cerebral Matters Dartmouth-Hitchcock Atlanta, GA Medical Center, Lebanon, NH David Newell, MD Seattle Neuroscience Institute Swedish Robert Kooken, PhD Gary K. Steinberg, MD, PhD Hospital, Seattle, WA Neuropsychological Services, Stanford University School of Medicine, New Zealand Stanford, CA Medical Advisory Board of Directors Bernard R. Bendok, MD Michael Lawton, MD Rafael Jesus Tamargo, MD Mayo Clinic, Phoenix, AZ University of California San Francisco The Johns Hopkins Hospital, Medical Center, San Francisco, CA Baltimore, MD Gavin W. Britz, MD, MPH, FAANS Houston Methodist Hospital, Stephen Lewis, MD, FRACS Ajith Thomas, MD Houston, TX Perth, Australia Beth Israel Deaconess Medical Center, Boston, MA Aaron A. Cohen-Gadol, MD, MSc R. Loch Macdonald, MD, PhD Methodist Hospital, Indiana University, St. Michael’s Hospital, University of John A. Wilson, MD Indianapolis, IN Toronto, Ontario, Canada Wake Forest Baptist Health, Winston-Salem, NC E. Sander Connolly Jr, MD, FACS Neil A. Martin, MD Columbia University Medical Center Geffen School of Medicine Gregory J. Zipfel, MD and New York-Presbyterian Hospital, at UCLA, Los Angeles, CA Washington University, St. Louis, MO New York, NY Thomas Masaryk, MD Mario Zuccarello, MD Aaron S. Dumont, MD The Cleveland Clinic, Cleveland, OH University of Cincinnati, Cincinnati, OH Tulane University School of Medicine, New Orleans, LA Brain Aneurysm Foundation 2 In Gratitude The Brain Aneurysm Foundation is fortunate EXECUTIVE COMMITTEE to have a Medical Advisory Board composed John C. Rogers Chairman of the Board of neurologists, neurosurgeons and interventional neurologists from around the Paul Games globe working at many of the world’s most Treasurer prestigious medical facilities. These doctors Elaine Schaller provide continued expertise and support to Secretary the foundation in a variety of ways and we are grateful for the time contributed and the BOARD MEMBERS dedication of our medical experts. Kevin Brennan The Brain Aneurysm Foundation is grateful Deidre A. Buckley, NP Past President for the service of the Board Members Scott Campbell and Executive Committee, who give very James DiClemente generously of their time, talent and individual Rep. Paul Donato perspective providing inspired direction to Frank Eeckman, MD, PhD fulfill the mission of the organization. Joy Mullin Joe Rooney Karly Soulas STAFF DIRECTORY Christine Buckley Executive Director Debra Coulter Director of InformationTechnology and Administration Paul DeLeo Accountant OUR MISSION To promote early detection of brain Martha DiLorenzo Executive Assistant aneurysms by providing knowledge and raising Kristin Kretschmer awareness of the signs, symptoms and risk factors. Director of Marketing MaryAnn McClintic Work with medical communities to provide support Administrative Assistant networks for patients and families, as well as to Kathleen Monahan Event Coordinator further research that will improve patient outcomes Lynn Nuttall Graphic Design and Social Media and save lives. 3 Brain Aneurysm Foundation A WORD FROM The Executive Director 2016 was a year full of accomplishments for the foundation! We were fortunate to add new board members with diverse backgrounds and individual passions each brings to the table, including our new Board Chairman, John Rogers of Milwaukee, Wisconsin. The website was updated and converted to WordPress, a more user-friendly platform. Our day on Capitol Hill was invigorating, with nearly 100 participants. It resulted in the passage of Senate Resolution 438, designating September as National Brain Aneurysm Awareness Month. The foundation continued to increase its level of research funding with a record amount of $310,000. Our awareness and educational initiatives continued by promoting our PSA’s and documentaries, as well as creating our first ever youth fact sheet. Social media outreach grew tremendously through the various outlets making it possible to connect with a multitude of new people to help spread the awareness of brain aneurysms in an effort to promote early detection and save lives. So, thank you for your continued support of the mission of the Brain Aneurysm Foundation. YOU are the reason we continue to strive for a world without death or disability from brain aneurysms. I look forward to OUR achievements in 2017. Best wishes- Christine Buckley The Medical Advisory Board Executive Director On behalf of the Medical Advisory Board, I congratulate all who have contributed to the success of the foundation in 2016. Your generosity given in so many ways allowed the foundation to award $310,000 to 11 different research projects this year! This is a tremendous accomplishment and brings the total funds awarded by the BAF over the past ten years to approximately $1.7 million. These funds are critical to improve identification and treatments of unruptured aneurysms and outcomes for all those affected by brain aneurysms, as well as aneurysmal subarachnoid hemorrhage and its associated complications, such as vasospasm and stroke. I look forward to 2017 being an even better year and that through our research, lives will be saved. Thank you all for your support of the Brain Aneurysm Foundation! Christopher S. Ogilvy, MD Brain Aneurysm Foundation 4 REVENUES - $1,213,798 48% Events $584,459 48% Donations by Individuals 4% $576,979 Corporate Donations $52,360 EXPENSES - $1,164,213 13% 12% Education/Support/Awareness $543,133 28% Research 47% $330,906 Management and General $145,980 Fundraising $144,194 Financial Summary Since 1994, when the Brain Aneurysm Foundation was established as a public charity, our funding has been targeted to provide critical awareness, education, support, advocacy, and research funding to reduce the incidence of brain aneurysms, promote early detection, and improve patient outcomes. The foundation has no endowment; every dollar we raise is deployed to advance our mission to create wider awareness of brain aneurysms; to provide support for those affected by brain aneurysms; and to educate patients, their families, and the medical community about brain aneurysms. From year to year the foundation strives to maintain its low overhead through vigilant governance of expenses and constant review of nonprofit best practices and methodologies. 5 Brain Aneurysm Foundation RESEARCH In 2016, the Brain Aneurysm Foundation awarded 16 grants to 11 recipients totaling $310,000, supporting our commitment to invest in brain aneurysm research. 2016 Research Grant Symposium The Brain Aneurysm Foundation awards research grants for basic How do your dollars get put to work? scientific research directed at early detection, improved treatment modalities, and technological advances that will ultimately improve outcomes BAF GRANT OVER for patients with brain aneurysms. RECIPIENTS $1.7M The foundation’s Research Grant Committee is headed by Robert Rosenwasser, MD, FACS, Professor of Radiology and Neurosurgery at Thomas Jefferson University Hospital. He, along with other members of the Medical Advisory Board, scores all grant applications to determine grant recipients based on the highest scores. IMPROVING PATIENT OUTCOMES Brain Aneurysm Foundation 6 2016 RESEARCH GRANT AWARD RECIPIENTS Jinglu Ai, MD, PhD, St. Michael’s Hospital, University of Toronto Cami Clark Chair of Research: $30,000 Debbie Feiger Chair of Research: $10,000 Awarded for: Role of Calpain Activation in White Matter Injury after Subarachnoid Hemorrhage Matthew Alexander, MD, University of California San Francisco TeamCindy Alcatraz Chair of Research: $20,000 Awarded for: Genetic Analysis of Cardiovascular Disease and Inflammation in Individuals with Cerebral Aneurysms: Toward Propensity Scores for Predicting Development and Risk of Rupture Ahmed J. Awad, MD, Icahn School of Medicine at Mount Sinai, Mount Sinai Health System Jinglu Ai, MD, PhD Cynthia Lynn Sherwin Chair of Research: $20,000 Awarded for: The Role of Epigenetic and Genetic Variants in the Molecular Pathogenesis of Intracranial Aneurysms in Humans Steffen-Sebastian Bolz, MD, PhD, Governing Council of the University of Toronto Northwell Health - North Shore University Hospital Brain Aneurysm Center Chair of Research: $20,000 Awarded for: A New Intervention that Reduces Brain Injury Following Subarachnoid Hemorrhage Brian L. Hoh, MD, FACS, FAHA, FAANS, University of Florida Shirley Dudek Demmer Chair of Research: $25,000 Fight Like Frank Chair of Research: $15,000 Awarded for: The Estrogen-Deficiency-IL-17 Pathway for Cerebral Aneurysm Growth and Rupture Ahmed J. Awad, MD Jesse Jones, MD, University of California Los Angeles Southern NH and Merrimack Valley Awareness Train Chair of Research: $15,000 Awarded for: Endovascular Sympathetic Denervation for the Treatment of Vasospasm in Aneurysmal Subarachnoid Hemorrhage Bijal Mehta, MD, MPH, MA, Harbor-UCLA Medical Center/Los Angeles Biomedical Institute Ellie Helton Chair of Research: $25,000 Awarded for: Epigenetics of Lymphocytes from Ruptured Versus Unruptured Cerebral Aneurysm Patients Hui Meng, PhD, State University of New York at Buffalo Carol W. Harvey Chair of Research: $25,000 Kristin’s Legacy of Love for Kristen Shafer Englert Chair of Research: $20,000 Awarded for: Development of Blood-Based Biomarkers for Brain Aneurysm Detection: Stage III - Model Development, Validation and Transition from Neutrophil to Whole Blood Bijal Mehta, MD, MPH, MA Peter J. Morone, MD, Vanderbilt University Medical Center Steph and Holly Chair of Research: $20,000 Awarded for: A Cell Permeant Peptide Nanoparticle to Prevent Cerebral Vasospasm after Subarachnoid Hemorrhage Kamil W. Nowicki, MD, PhD, University of Pittsburgh Timothy P. Susco Chair of Research: $25,000 Dawn Brejcha Chair of Research: $10,000 Awarded for: Targeting Platelet Inflammatory Axis in Cerebral Aneurysm Progression and Healing Ana-Maria Vranceanu, PhD, Massachusetts General Hospital BIDMC Brain Aneurysm Institute Chair of Research: $10,000 Christopher C. Getch Chair of Research sponsored by the CV Section: $10,000 Awarded for: Prevention of Chronic Depression, Anxiety and Post Traumatic Peter J. Morone, MD Stress Disorder (PTSD) in Patients with Brain Aneurysm and their Caregivers 7 Brain Aneurysm Foundation AWARENESS AND EDUCATION What began as a few simple brain aneurysm facts on billboards soon became a grassroots awareness campaign that took hold and resonated across the country. The first announcement of our #1in50 CAMPAIGN reached almost 25,000 people – resulting in hundreds of people sending their 1 in 50 photos and over 3,000 visitors to our website. We offer 4 educational books in LANGUAGES Patty Petrula, brain aneurysm survivor from Paramus, NJ. “ The worst headache of Ten days later Patty woke up to discover she had suffered a 300+ people tuned into our my life dropped me to ruptured brain aneurysm and stroke – her survival was a miracle. educational webinars. And that’s just how Patty has operated since. “I feel like I’m a the ground - it was like a walking miracle…I survived for a reason and a purpose. I hope to thunderclap in my head.” inspire and motivate those who don’t think they can…yes, you can and you will!” Patty’s mantras include “survive and thrive” and “progress not perfection.” She credits her support group for helping her understand what to expect during her recovery journey. We participated in a This past September, Patty turned up the volume and focused her energy on raising local awareness. Twitter Chat during Patty’s fundraising events are grassroots community-based efforts like our #1in50 campaign. To Stroke Awareness Month raise awareness, Patty reached out to her community and organized everything from fundraisers at with CNN Chief dance studios and fitness centers, to the wearing of brain aneurysm awareness ribbons by the town’s Medical Correspondent cheerleaders, lacrosse team, and even tied around the trees! When the #1in50 campaign launched, Dr. Sanjay Gupta Patty was one of the first to send in her photo and honor the community that supported her through her recovery.
Description: