ANNUAL REPORT 2012 | PROGRESS 1 OUR MISSION The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. 2 ANNUAL REPORT 2012 | PROGRESS TABLE OF CONTENTS Foreword by Michael J. Fox...................................................4 2012: The Year in Numbers...................................................5 Letter from the CEO and Co-Founder......................................6 2012 Donor Listing..............................................................8 2012 Financial Highlights...................................................40 Boards and Councils..........................................................47 3 FOREWORD BY MICHAEL J. FOX Dear Friend, When we first started the Foundation, we asked a simple question: Why can’t we cure Parkinson’s disease? Then, we knew what would get us there: our belief in taking risks and willingness to do whatever it takes. But what we didn’t know then, and what still overwhelms me today, was how many of you would step up to be a part of this movement. Everyone represented in this book believes we can find a cure in our lifetime. Through your generous support, you are helping make this vision a reality for millions of patients. Thank you for joining us on our journey. Together, we will reach our end goal: a world in which Parkinson’s disease is no one’s disease. With gratitude, Michael J. Fox 4 THE MICHAEL J. FOX FOUNDATION FOR PARKINSON’S RESEARCH 2012: THE YEAR IN NUMBERS As part of PPMI, MJFF’s global MJFF awarded more than 60,000 DONORS biomarkers initiative, hundreds of stepped forward with financial support participants donated almost $56 MILLION for MJFF, helping make our progress toward a cure possible. 70,000 BIOSAMPLES THROUGH 200 GRANTS to science. to accelerate high-impact Parkinson’s research. MJFF engaged in 1,255 With a 26 ACTIVE PARTICIPANTS $1 MILLION GRANT from around the world connected with from MJFF, pharmaceutical giant Sanofi INDUSTRY PROJECTS Parkinson’s research experts and each other in partnered with the Foundation to bring a because creative collaborations will TREATMENT FOR COGNITIVE IMPAIRMENT yield the results patients need. 6 HOT TOPICS WEBINARS. into the clinic. 85 PERCENT of all clinical trials OVER face delays in recruiting participants. 85,000 Taking action to help change this, 100,000 VISITORS 12,722 VOLUNTEERS PEOPLE joined the MJFF community online each completed profiles for Fox Trial Finder (foxtrialfinder.org), attended a month, visiting michaeljfox.org. including Michael J. Fox. Team Fox event. 5 “BUILDING MOMENTUM IN PURSUIT OF A CURE:” A LETTER FROM THE CEO AND CO-FOUNDER More than five million Americans are LANDMARK BIOMARKER INITIATIVE IS A NEW MODEL touched by Parkinson’s disease, whether FOR COLLABORATIVE RESEARCH they have the disease or love someone Without critical tools like biomarkers, pharmaceutical companies hesitate who does. In 2012, as always, our to pursue research into diseases like Parkinson’s. That is why one MJFF whole community played a role in investment in particular embodies our groundbreaking approach in action, The Michael J. Fox Foundation’s efforts and our commitment to do whatever it takes to accelerate drug to accelerate the cure. development. Now a $55-million study, the Parkinson’s Progression Our momentum just keeps building — Markers Initiative (PPMI) aims to forge a key missing link in our pursuit in the Parkinson’s drug development of a disease-modifying therapy — and a cure. We recently announced Todd Sherer pipeline and across the PD research the launch of a new arm of the study involving people at increased risk of enterprise. As a public charity, we had developing Parkinson’s disease. This followed the successful enrollment of nearly 60,000 individuals, corporations the original 600 participants, who are already contributing vital data and and foundations step forward with precious biosamples to Parkinson’s researchers across the globe. financial support, making our progress Five years ago, many were skeptical of whether the time was ripe to begin possible. Thousands more raised funds a large-scale study on Parkinson’s biomarkers. Yet today the project has and awareness through Team Fox or won the enthusiastic support of academic and industry researchers, volunteered for clinical research. government and pharmaceutical partners, and patients and families. In Together, we’re spreading the word and addition to the new at-risk arm, the study infrastructure is being leveraged the inspiring belief that a cure can be to speed the establishment of an entire network of high-impact found in our lifetime. Parkinson’s studies. A consortium of researchers charged with advancing Debi Brooks After igniting the generosity and genetic discoveries toward practical treatment strategies has also been enthusiasm of Foundation brought under PPMI’s umbrella. supporters for two years, the Brin Wojcicki Challenge finished strong in An effort of this magnitude required MJFF to chart an entirely new 2012. (Read more on page 27.) The entirety of Challenge giving — and course, taking on an unprecedented leadership role for a private research more — is already deployed, in keeping with our promise to donors to funder. With your support, the effort is not only providing key insights rapidly and strategically direct every dollar raised to patient-relevant into how the disease is defined, but has become a new model for research. In 2012 MJFF awarded $56 million across priority areas collaborative research. targeting patients’ most urgent unmet medical needs, pushing past the $300-million mark in research funded since inception. 6 Parkinson’s Community VOLUNTEERS TAKE ACTION INTO THEIR At a time of decreasing federal research funding, MJFF was encouraged by OWN HANDS the government’s announcement of the BRAIN (Brain Research through Timely recruitment for PPMI demonstrates what is possible when patients Advancing Innovative Neurotechnologies) Initiative with a proposed initial and their loved ones choose to participate directly in research. But investment of $100 million in 2014. This effort could lead to new hundreds of PD studies chronically lack participants, and Fox Trial Finder, understanding of the complex workings of the normal human brain, and which officially launched in April 2012, is helping connect willing to treating its diseases, including Parkinson’s. Industry, too, is embracing volunteers with the trials that badly need them. By year-end, more than creative partnerships to pool resources and expertise toward the common 12,000 had completed profiles on Fox Trial Finder; as of this writing, goals of identifying more promising targets and speeding these on their nearly 20,000 volunteers have raised their hand to participate. In 2013, path to regulatory approval and market. our goal is 30,000, but tens of thousands more are needed. Clinical We see a growing recognition that the human brain is the next frontier trial coordinators are starting to report a boost in recruitment activity. for medical research — and that working together, we can conquer the (If you haven’t already created a profile, we hope you will today at diseases that attack it. As we face a world where an estimated three of out foxtrialfinder.org.) five Americans will suffer from a central nervous system disease in their lifetime, we can’t afford to wait for new approaches. Team Fox members, too, showed their mettle in 2012, raising $6.3 million in another record-breaking year. Since 2006, Team Fox As you know, our Foundation has always looked at Parkinson’s drug members and their networks of supporters have contributed more than development holistically. We strive to tackle the problem from all sides — $20 million to the Foundation’s research programs, carrying our message developing promising drugs scientifically, while simultaneously shoring of action and optimism to communities around the world. up the business and regulatory aspects of bringing new medications to market. None of our work is easy and we rarely have a blueprint for what We’re inspired every day by the energy and dedication of our passionate we set out to do. community members who are taking the bull by the horns and helping speed progress toward a cure. What we do have, and are deeply grateful for, is your support and belief in our work. Thank you for helping advance our mission to cure Parkinson’s THE BRAIN IS THE NEXT FRONTIER disease. With you by our side, we know we will achieve our shared vision. The Michael J. Fox Foundation has long been a champion of collaborative efforts to accelerate the fruits of our shared investment in brain research. With gratitude, Now we are cautiously optimistic that the paradigm shift we seek in the Parkinson’s field is gaining traction across the neurological landscape. We’re heartened by recent public and private efforts emphasizing collaboration over competition in the collective pursuit of cures. Todd Sherer, PhD Deborah W. Brooks Chief Executive Officer Co-Founder & Executive Vice Chairman 7 2012 DONOR LISTING Thanks to nearly 60,000 individuals, corporations and foundations, The Michael J. Fox Foundation funded over $56 million in research in 2012. The generosity represented in the following pages fuels our belief that a cure is possible in our lifetime. This report lists those who honored the Foundation with significant gifts in 2012. Also listed are the many friends and family members to whom they paid tribute with their donations. Their names inspire us each day as we pursue our vision of a world free of Parkinson’s disease. $25 million and above $200,000–$499,999 The Brin Wojcicki Foundation The Chadin Family Trust Lynn Diamond* $2,500,000–$24,999,999 Cheryl and David Einhorn Mrs. Edmond J. Safra The Sam J. Frankino Foundation The Edmond J. Safra Foundation* Eleanor M. Miller Trust $1,000,000–$2,499,999 Moët Hennessy USA/Helen and Martin Scorsese Lauren and Mark Booth Julie and Doug Ostrover The W.