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Powering Progress the Michael J. Fox Foundation for Parkinson's Research 2014 Annual Report

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Powering Progress the Michael J. Fox Foundation for Parkinson's Research 2014 Annual Report Powering Progress The Michael J. Fox Foundation for Parkinson’s Research 2014 Annual Report 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. Table of Contents 2 A Note from Michael 3 A Letter from the CEO and Co-founder 6 2014 in Pictures 9 2014 Donor Listing 19 Legacy Circle 29 2014 Tributees 33 Recurring Gifts 35 Team Fox 47 The Bachmann-Strauss Dystonia and Parkinson Foundation 50 2014 Financial Highlights 56 Photo Credits 57 Boards and Councils Our year was full of achievements with tremendous potential to benefit patients and families. Look for special sections with this symbol sharing the progress we’re driving together. 02 A Note from Michael Dear Friend, Our Foundation is working urgently to identify and support the research that will make a Parkinson’s cure inevitable. We’re fortunate that our friends and supporters are just as energetic. Your commitment allows us to keep taking the smartest risks and bringing the right players to the table to move the dial. We are in the midst of incredible advances — some of the most promising ever seen in neuroscience. While work remains to be done, we’ve never been more optimistic. Throughout this report you’ll find evidence of both the power of our progress and the tremendous potential of our future. Thank you for being part of it. THE MICHAEL J. FOX FOUNDATION ANNUAL REPORT 2014 03 A Letter from the CEO and the Co-Founder Dear Friend, Parkinson’s research is in the midst of a renaissance. The field has been invigorated by multiple scientific breakthroughs and promising new leads. In confluence with seminal advances in biology, powerful new computing technologies and an increasingly engaged patient community have combined to set the stage for a new era of discovery. And thanks to your support, The Michael J. Fox Foundation forward in testing, as have several other synuclein is leading the charge toward a world without Parkinson’s strategies we funded in early, high-risk stages. We also are disease (PD). Due in no small part to our focus on high- working to develop an imaging agent that could visualize priority therapeutic targets, PD research in 2014 continued synuclein in the living brain in order to help scientists making tangible progress toward clinic and market. determine whether a drug is working — similar work has In these pages, it is our privilege to update you on key been instrumental in recent groundbreaking findings in advances in Parkinson’s drug development over the past the Alzheimer’s field. year and report back to you on the ongoing impact of Our holistic strategy targeting LRRK2, the most your philanthropy. common Parkinson’s genetic risk factor discovered to date, also marches forward. When a pre-clinical finding Speeding the next generation of by pharmaceutical firm Genentech signaled that LRRK2 treatments drugs might bring about changes in lung tissue, the Alpha-synuclein (the protein that clumps in brain and Foundation spearheaded a highly unconventional body cells of people with PD, giving rise to the toxicity collaboration of three companies who set aside their and cell death that mark the disease process) remains status as competitors to work side-by-side assessing the focus of intense investigation as a potential drug the seriousness of these results. It would be impossible target. In 2014 AFFiRiS, an Austrian biotechnology to overstate the rarity of such cooperation. It is no company, announced positive Phase I results from its exaggeration to say that this consortium, made possible Foundation-supported study targeting alpha-synuclein. by each company’s trust in our Foundation, averted a A second, similar approach led by biotech and setback to the LRRK2 field that would have cost years of Foundation collaborator Prothena also recently moved progress. (Learn more on page 28.) THE MICHAEL J. FOX FOUNDATION ANNUAL REPORT 2014 04 Todd Sherer, PhD Deborah W. Brooks Because alpha-synuclein and LRRK2 hold potential emerged to track and measure health. The Foundation to serve not just as drug targets but as biomarkers of is committed to developing these technologies to Parkinson’s disease, our landmark Parkinson’s Progression speed Parkinson’s drug development. Patients today Markers Initiative expanded in 2014 to build and follow have an unprecedented opportunity to effortlessly genetic cohorts of people who carry mutations in these contribute immense volumes of objective data on the genes. Study leaders also presented baseline findings at lived experience of Parkinson’s disease, complementing the 18th International Congress of Parkinson’s Disease traditional modes of research and furnishing scientists and Movement Disorders in Stockholm. with a more holistic understanding of PD. Alongside our primary goal of speeding a cure for We’ve partnered with Intel Corporation to collect and Parkinson’s, our Foundation has always worked to analyze data from people with Parkinson’s (and control highlight the vital need for improved symptomatic volunteers) on measurable aspects of the disease, such treatments for those living with Parkinson’s disease today. as slowness of movement, tremor and sleep quality, The past year has seen great progress in this area as well, through wearable computing and big data analytics. with two new formulations of levodopa receiving FDA (Learn more on page 23.) Additionally, we’re collaborating approval early in 2015, and several Foundation-funded with researchers at Sage Biosciences and the University novel delivery strategies advancing in clinical trials. of Rochester on the evolution of mPower, a Parkinson’s One under-addressed symptom of Parkinson’s mobile app developed in concert with Apple Computer disease is dystonia, severe and painful muscle cramping and built on the Research Kit platform announced by that also can occur outside of Parkinson’s. In September, Apple early in 2015. we announced a collaborative research alliance We also have launched Fox Insight, a new online with The Bachmann-Strauss Dystonia & Parkinson destination for patients interested in technology- Foundation. Such partnerships do much to extend enabled research opportunities. Fox Insight is both a our mission and bring needed funds and awareness to virtual clinical trial in itself and a portal to other digital related disorders and disabling symptoms experienced opportunities in Parkinson’s research, including mobile by people with PD. This report honors significant apps crowdsourcing data directly from patients for supporters of The Bachmann-Strauss Foundation in ongoing study. 2014 (see page 47). Research in the 21st century Mobilizing patients and families As personal computing continues to revolutionize Rallying Parkinson’s patients and families to greater healthcare, a dizzying array of websites, mobile apps, participation in traditional “brick-and-mortar” studies software platforms and wearable computing devices have remains critical. Fox Trial Finder, our online smart-match THE MICHAEL J. FOX FOUNDATION ANNUAL REPORT 2014 05 tool connecting people with well-matched clinical trials, reached 40,000 registered users in 2014. Yet increasing the flow of volunteers into trials requires contextualizing research participation within a broader set of choices and tools to combat isolation and engage more broadly in the life of the greater Parkinson’s community. In particular, it has become increasingly PROGRESS IN evident that people who see the right doctor for their Parkinson’s disease not only obtain better individual DEVELOPING A outcomes for their own health, but are more likely to take greater steps toward holistic engagement, including TREATMENT TO research engagement. In an effort to help more individuals connect with high- SLOW OR STOP PD quality Parkinson’s resources in their local community, in 2014 we partnered with AbbVie to launch Partners in In July, the first drug against alpha- Parkinson’s. This nationwide strategic health initiative represents a robust new opportunity for an initiation into synuclein to reach clinical testing the world of Parkinson’s research, alongside extensive announced positive Phase I safety resources for finding the right doctor (often a movement disorder specialist trained neurologist) and connecting trial results. Austrian biotech AFFiRiS with others in the Parkinson’s community. Through free, AG developed an immunotherapy, day-long conferences held in communities across the country, supported by virtual and multimedia tools such or “vaccine,” approach that induces as an online movement disorder specialist finder, Partners antibodies against accumulation of in Parkinson’s in 2014 connected with more than 10,000 people with Parkinson’s and their loved ones, many of alpha-synuclein — the protein that whom reported the program to be one of the best they clumps in the brain and body cells of had experienced. Clearly, Parkinson’s research is experiencing everyone with Parkinson’s disease. unprecedented momentum. To share every promising With early-stage, high-risk support activity in our portfolio would require far more space than we have in this report. Critical Foundation investments from MJFF starting in 2011, AFFiRiS made possible by your support are building on each other, demonstrated promising results as every victory tees up the next important question. This is what “powering progress” looks like. Together we are and secured more than $42 million making tangible strides toward our goal of curing PD and transforming the lives of five million patients and families in follow-on funding from venture worldwide. Thank you. capital and the EU government for With gratitude, the next stages of research. Clinical studies are ongoing, including an MJFF-funded boost study to test Todd Sherer, PhD Deborah W. Brooks the safety and effect of a different CHIEF EXECUTIVE OFFICER CO-FOUNDER & EXECUTIVE VICE CHAIRMAN vaccination dosage. THE MICHAEL J. FOX FOUNDATION ANNUAL REPORT 2014 06 2014 in Pictures Clockwise from top left: Paul Simon and Michael J.
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