IMISTIC EFFICIENT FOCUSED COMMITTED COLLABORATIVE DR IVEN INNOVATIVE OPTIMISTIC EFFICIENT FOCUSED COMMITTED COLLABORATIVE DRIVEN INNOVATIVE OPTIMISTIC EFFICIENT FOCUSED COMMITTED COLLABORATIVE DRIVEN INNOVATIVE O ACCELERATING THE CURE PTIMISTIC EFFICIENT FOCUSEDThe newsletter COMMITTED for friends and supporters COLLABORATIVE of DRIVEN INNOVATIVE OPTIMISTICThe Michael EFFICIENT J.Fox Foundation for Parkinson’s FOCUSED Research COMMI SPRING 2010 TTEDMARK SELIGER COLLABORATIVE DRIVEN INNOVATIVE OPTIMISTIC EFFIC “It Takes All of Us Getting NEWS FROM Involved However We Can” THE CEO In 2010, MJFF is leading a major clinical study to find PD biomarkers and launching a campaign to help you get personally involved in the search for a cure. Accelerating the Cure spoke to Michael J. Fox about what involvement ELENA OLIVO means to him. Each spring brings with it Parkinson’s Awareness Month, the Unity Walk in Central Park, and our Foundation’s special patient-focused edition of The Foundation is on the verge of launching for example. I get that. At the same time, the Accelerating the Cure. We’re excited to once a five-year clinical study in 19 sites across outcomes we want are not going to fall from the again share with you the stories of people with the United States and in Europe to develop sky. It takes a village. Actually, I wish it were Parkinson’s in their own words. Their voices biomarkers of PD. Did you ever imagine that just a village — it takes a major metropolis. It remind us that, while PWPs face challenges that are real, they rise to the occasion time and again the organization you started would undertake a takes all of us getting involved however we can. — defining themselves not by their disease but project of this size and scale? And everyone can ask themselves: What can by their optimism, their positive attitudes and I do? What is realistic for me? And commit to MJF: From day one, our attitude has been that their actions. doing that much. If you can’t join a trial, could we would try to identify the biggest problems you ask friends or family if they would? Michael J. Fox and our Foundation have always standing between us and a cure, and then set been all about taking action. And in 2010, we’re about solving those problems. At this point it’s I have the sense that there are countless more firing on all cylinders. It starts here, with our clear that one of the biggest problems is a lack friends and well-wishers who now also want to interview with Michael (at left) about a major of research tools that will change the game in go above and beyond contributing dollars in clinical study we’ll be launching this year in terms of developing new treatments. Biomarkers support of our mission. Don’t get me wrong — pursuit of critically needed biomarkers of PD. are in that category. We’ve been funding various we appreciate and absolutely need the financial We’ll also be putting a new effort in place to help PWPs and their loved ones find meaningful ways biomarker projects for years. Now the time has support — it enables so much. But people are to get involved with MJFF and the Parkinson’s come for a concerted, unified effort that will also looking for other, even more hands-on ways community to make a personal impact on the optimize our chances for results. Our attitude is, to be part of our shared mission to end PD. We fight for a cure. You’ll be hearing much more let’s roll up our sleeves and get it done. want to help them do that. about it in the months ahead. MJFF deliberately holds no endowment, starting Let’s talk about how people can get hands-on This newsletter also includes our first ever our fundraising from zero every year. For this in the search for a cure. pull-out-and-save Parkinson’s Action Plan, project we’ll be adding $40 million over five packed with tips and news you can really use. MJF: First and foremost, there is a major years, on top of what we will raise and allocate From singing (could help with vocal aspects of unmet need for people both with and without as part of our ongoing research agenda. That is PD) and dancing (seems to provide symptomatic PD to take part in clinical research. For every relief), to staying on top of legislative really ambitious. therapeutic approach that actually makes it as developments in health care policy, we’ve MJF: It is ambitious, no doubt. This is the first far as the clinic, you have to remember how compiled wisdom and counsel from the best time we’ve sponsored a clinical study of this many years and millions of dollars have gone in sources we know to help you take action, take scope. We need to enroll 400 newly diagnosed to getting that far. You’ve already beaten some control and make 2010 your best year yet. PD patients and 200 age-matched healthy serious odds. And this promising work may be As always, thank you for sharing our mission to control subjects. The science is complex. Lining sitting there, poised for the clinical trial, and find the cure and transform millions of lives. up the funding is a challenge. But nothing worth we line up the funding and we’re finally in a PD may be a movement disorder, but together we having comes easily. Everything we’ve learned position to get real answers — and then the are a movement that will make it a thing of the up to now, the partnerships in place, the results trial languishes for lack of enrollment. That’s past. of research we’ve funded — it’s all put us in heartbreaking. Warm regards, position to launch this effort. Low enrollment is being felt by all of us in the The Foundation will do whatever it takes to form of slower progress toward cures. Across all speed the cure — and we’ve come to know it diseases, I’ve learned that 85 percent of trials Katie Hood, CEO takes different things at different times. What finish late because of difficulty with enrollment. would you say to your fellow patients who One of the specific challenges we face in PD wonder what “whatever it takes” means for is that many trials require folks who have just them? been diagnosed and may still be coming to FACING PD HEAD-ON: terms with the news. INSIDE PWPS IN THEIR OWN WORDS MJF: PD or not, people have a lot of struggles (PP. 2-3) right now — worries about insurance, about jobs. YOUR PARKINSON’S ACTION PLAN Not everyone has the time to join a clinical trial, continued on page 6 FOR 2010 (PULLOUT) Facing PD Head-On: PWPs in Their Own Words In March, the U.S. Senate officially designated April as Parkinson’s Awareness Month. To honor the occasion, heT Michael J. Fox Foundation once again salutes people with Parkinson’s (PWPs) everywhere who are living their lives with spirit, joy and hope, in spite of the challenges posed by PD. Here are the stories of a few PWPs we’ve been privileged to meet. If you would like to share your story for possible publication in an upcoming edition of Accelerating the Cure; FoxFlash, our e-newsletter; or on the MJFF Web site, please e-mail 350 to 400 words to [email protected]. SOANIA MATHUR: READY TO FACE IT To paraphrase the words of Phillips Brooks, a My family and I started an annual fundraiser on HEAD-ON noted American clergyman and author: Don’t pray our little nine-hole golf course. Since we began, for an easy life — pray to be a strong person. No our event has raised over $330,000 for PD It started on a summer’s day: a slight tremor in one really knows what life will bring. Whatever the research. Even more importantly to us, we have my finger. I was 27 and just beginning my career future holds for me, I am ready to face it head-on. encouraged others to support the Foundation and in family medicine. its mission. Soania Mathur is a member of MJFF’s Patient Council Soon I was diagnosed with young-onset and a family physician practicing outside of Toronto. Because of the leadership, compassion and Parkinson’s disease. As the tremor worsened She and her daughters are working on a children’s book selflessness of Michael and his Foundation, in my right hand, moved to my right foot, and about Parkinson’s disease. our community is now part of finding the cure. ultimately progressed to the left side of my body, Together, I know that we are making quantum I immersed myself in work and my growing family. RICK RUCKER: QUANTUM LEAPS IN leaps in PD research. PD RESEARCH Rick and Linda Rucker started Rucker’s Candy in Bridgeport, Illinois, in 1985. Today their candy I was 46 in April 2002 when I was diagnosed business serves every U.S. state and Canada. with Parkinson’s disease. With no idea what PD was or how it was going to affect me mentally MATT WILBUR: STILL ONE STEP AHEAD or physically, I dove head first into learning as much as I could about PD. I started a PD support In the late 1970s I became a recreational runner. group in my hometown. I found The Michael J. Over the next 20 years, I ran over 30,000 miles Fox Foundation and learned that the organization and 25 marathons, with a personal best time shares my confidence that we will find a cure — sooner, rather than later.