Champions of Change Blog
- Posted byon March 30, 2015 at 12:42 PM EDT
Anne Wojcicki is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
I am humbled to be named one of the White House Champions of Change and to be in the company of such luminaries in the quest to conquer Parkinson’s.
Taking risks in the name of change is important, especially in health care.
I co-founded 23andMe with the belief that the combination of science, social media and you, the consumer, could change research and ultimately create new paths for treatment and prevention. In a short time we have built what is now the world’s largest community of genotyped Parkinson’s patients. This has allowed researchers to discover dozens of new genetic associations for Parkinson’s, and helped give scientists new insight into the disease .Our researchers are investigating not just the genetics that increases one’s risk for Parkinson’s, but what genetic variants may be protective against the disease. We have partnered with non-profit organizations, academic researchers and pharmaceutical companies all in a multi-front effort to make breakthroughs.
I am most inspired by the members of our Parkinson’s research community. They contribute something far more valuable than money: information about themselves. By enabling individuals to come together and share their genetic information and information about themselves, we have the opportunity to make new discoveries and cures at a much faster pace. This is what most excites me about the novel research platform 23andMe pioneered.
Directly involving consumers in researchers is new, and what we have learned is that people are eager to participate in research. Sometimes the best of humanity comes out when we are sick; no one wants to see another suffer in illness. When 23andMe asks people for information about themselves to contribute to research on disease, we see significant participation. So what I have learned after eight years is that there is incredible opportunity before us to gather enough knowledge from the community that we can transform our understanding of health and disease.
My own family has a genetic risk for Parkinson’s, so this mission is personal. Discovering how to prevent or how to treat Parkinson's disease is important for my family and my children. I don’t want to wait for the system to come up with an answer. I want to be part of the solution.
I want to thank the 600,000+ individuals who are currently participating in 23andMe research. They have helped power breakthrough discoveries in Parkinson’s and other diseases. That is incredibly important to me, and hopefully the information I have contributed about me will power the discoveries that help the disease research that is incredibly important to you. We’re all in this together.
Anne Wojcicki, CEO of 23andMe, helped co-found the direct to consumer genetics testing company in 2006 after a decade spent investing in healthcare. 23andMe has built one of the world’s largest databases of individual genetic information.
- Posted byon March 30, 2015 at 11:56 AM EDT
Steven DeWitte is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
It was March 5, 2005, I heard the chilling words, “I’m relatively certain you have Parkinson’s disease.” I was totally ignorant of the implications, and if not for the solemn delivery, I would not have viewed this news as serious. I slowly began my self-education, initially through Google and chat rooms.
Serious education began at the inaugural World Parkinson’s Congress, which revealed how the disease progresses over time, and exposed me to great people who deserved a better quality of life. I was inspired by fellow People with Parkinson’s (PWP) such as Robledo and Issacs. They showed me that patient advocates could have a broad reach and encouraged my drive for positive change.
I started my first support group in October 2006 with eight attendees. The group’s reputation grew, leading to the founding of the Connecticut Advocates for Parkinson's Inc. With names like Hespelers, Baldwins, Pelchat, and Johnson, it has evolved into a collaboration of three State Advocacy Groups named the Make a Difference Parkinson’s Alliance (MADPA), which serves over 300 PWP.
With this foundation, we began to understand and seek opportunities to make a difference, through education, advocacy, and participation in clinical trials:
Education: Patients need to understand the progressive nature of the disease and stay current with treatment options. Sharing their knowledge with others helps the Parkinson community to assess treatments effectiveness and it encourages others to “make a difference.”
Advocacy: There is no stronger influence for change, than sharing patient experiences with elected officials who can drive change through research funding and the appropriate support for regulatory authorities.
Participating in Clinical Trials: It takes over fifteen years and at least $1 billion to bring a symptom-relieving drug to market. Clinical trials are a vital step in this process and require a sufficient number of patients in to the various stages of the clinical trials. Accelerating the recruitment and enrollment of volunteers can have a direct impact on the time and cost to develop advance treatments for Parkinson’s disease.
I discovered two major obstacles to participation in clinical trials was access and fear. PWP were more willing to participate in Clinical Trials than the statistics represented, so I built a database of patients who would participate in trials if transportation were provided. Registrants increased, when they knew others would accompany them, thus eliminating some of the fears. From this, the Clinical Trial Transportation Program (CTTP) was created.
The Program demonstrated its effectiveness in several ways:
- The Program provides a list of pre-screened volunteers that dramatically reduces overall recruitment time.
- Trial results were accelerated, thus speeding data that can be used toward treatment-based research.
- The trial pool attributable to the CTTP lived over 100 miles from the Research Center. Volunteers through the CTTP are a new demographic for most studies.
- By reducing the time it takes to gather the data, there can be cost savings.
Since the program’s first trip to Boston with seven people on July 15, 2011, it has now logged over 100 patient visits at such institutions as Columbia Medical Center, Beth Israel Deaconess, and Weill Cornell.
This journey has brought me many good friends, which has increased my urgency to beat this disease. Through it, we have learned that patients of any disease can be empowered to make a difference, and are important partners in the development of disease modifying treatments.
I am truly humbled to be recognized as a White House Champion for Change, but share this honor with the many before me, and those currently, who are “making a difference” towards finding a cure for Parkinson’s.
Steven DeWitte is the founder and co-chairman for the Connecticut Advocates for Parkinson’s (CAP) and its affiliate organization, the Make A Difference Parkinson’s Alliance (MADPA)
- Posted byon March 30, 2015 at 11:51 AM EDT
Dr. Ray Dorsey is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
The burden of Parkinson’s disease is increasing rapidly both domestically and globally. Over the next generation, the number of people with Parkinson’s disease will almost double. However, many individuals with Parkinson’s disease lack access to care due to distance and disability. In the U.S., over 40 percent of Medicare beneficiaries with Parkinson’s disease do not see a neurologist and those that do not are 20 percent more likely to fracture a hip, 20 percent more likely to be placed into a skilled nursing facility, and 20 percent more likely to die. To increase access to care, we are using simple video calls to connect Parkinson’s specialists directly to patients in their homes. These virtual house calls offer patients the care they need, the convenience they want, and the comfort they deserve.
With generous support from the National Parkinson Foundation, Patient-Centered Outcomes Research Institute, Parkinson’s Action Network, and our technology partners, we are conducting the first national random controlled trial of telemedicine for Parkinson’s disease. In addition, with generous support from Davis Phinney and his foundation, and Drs. Michael Okun, Carlie Tanner, and Kevin Biglan, we have developed Race-PD which offers 250 individuals across the country the opportunity to connect with Parkinson’s disease specialists for free. We hope that these efforts will help remove barriers for this care model, including arcane licensing requirements and absent Medicare reimbursement. Our vision is to enable anyone anywhere with Parkinson’s disease to receive care.
We also want to enable anyone anywhere with Parkinson’s disease to participate in research. With unprecedented support from Apple, creative geniuses like the mathematician Dr. Max Little, and outstanding partners such as Sage Bionetworks and The Michael J. Fox Foundation, mPower was released on March 9, 2015. A smartphone application designed specifically for Parkinson’s disease research, mPower allows individuals with Parkinson’s disease to track their symptoms in real time, share this information with researchers, and receive immediate feedback for themselves. While not perfect, mPower provides a platform for greater future efforts, including the hope to connect more people to care.
Dr. Ray Dorsey is the David M. Levy Professor of Neurology and Director of CHET at the University of Rochester. Dr. Dorsey is helping investigate new treatments for movement disorders and improve the way care is delivered for individuals with Parkinson’s disease and other neurological disorders.
- Posted byon March 30, 2015 at 11:48 AM EDT
Michael S. Okun, M.D. is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
I am humbled but also honored to be named a White House Champion of Change, and I hope that this opportunity will help to bring awareness and to galvanize our country to come to the assistance of the over 1 million Americans with Parkinson’s disease. The recent forecasting estimates are staggering. If accurate, the numbers suggest an urgent need to wake up and to recognize that we are on the cusp of an emerging pandemic. It is frightening to consider that in the world’s most populous nations, the number of people with Parkinson’s will double to almost 30 million by the year 2030. These escalating statistics may seem unbelievable, but they are real, and they are growing. Age is the unavoidable and undeniable risk factor underpinning the development of Parkinson’s disease. As life expectancy increases, so too do the number afflicted.
Most of my colleagues in academia may identify me with the development of neural network approaches designed to facilitate a deeper understanding of the brain and to develop new therapies in Parkinson’s disease and deep brain stimulation (DBS). They may have read one of hundreds of boring articles or book chapters I have penned over the course of many years. As a physician caring for Parkinson’s disease patients, I do not however, consider this my primary identity and purpose. I believe my calling is to alleviate human suffering, and to add meaning to the lives of those suffering from Parkinson’s disease and movement disorders.
In travelling the world as the National Medical Director for the National Parkinson Foundation (NPF), I have met tens of thousands of Parkinson’s disease patients, family members, and friends. One of the most common questions on their minds is “what can I do to make my life and the lives of those around me better?” In 2002, we dreamed of building a model Center for Parkinson’s disease care, education and research. In 2011, former Attorney General Janet Reno was our first patient at the new UF Health Center for Movement Disorders and Neurorestoration. Our philosophy was and still is very simple, “the patient is the sun (not the doctor), and we should all orbit around the patient.” We created an integrated model to facilitate true patient-centered care and also to provide access to, and to promote Parkinson’s research. The model is exportable, and we have a regular influx of international visitors to Gainesville, FL. These visitors seek to learn the secrets required to create a value based interdisciplinary care facility for Parkinson’s disease patients and families. Additionally, I have had the privilege to help develop and administrate over 40 international NPF Parkinson’s Centers of Excellence. These NPF Centers set the “care standard” and they continue to drive the quality and innovation needed for the future of Parkinson’s disease care and research.
Access to specialist care has been an urgent need in the US and abroad. Since 2006, I have had the honor of hosting the online international “Ask the Doctor Forum,” on the NPF website. To date I have answered over 20,000 questions from patients, families and physicians. Reaching the Parkinson’s community with education and arming them with facts and data has been a daunting challenge, especially since most of the information is available only in English. To overcome this critical need, my colleagues and former trainees graciously helped me to translate my book, Parkinson's Treatment: 10 Secrets to a Happier Life into over 20 languages.
Listening to thousands of Parkinson’s disease sufferers, I am deeply inspired. Their rich history and experiences provide all the motivation necessary to press on toward better care and better treatments. The four simple words “you have Parkinson’s disease” will pierce the heart and drain the dreams of 50,000 people worldwide each year, but we can make a difference in their lives today and every day.
Michael S. Okun, M.D. is currently a professor of neurology and co-director of the University of Florida Health Center for Movement Disorders and Neurorestoration. He is also the national medical director for the National Parkinson Foundation.
- Posted byon March 30, 2015 at 11:41 AM EDT
Greg Wasson is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
Twenty years ago, when I was diagnosed, Parkinson’s was a movement disorder, period. The trope was “Alzheimer’s disease takes your mind but leaves your body intact; Parkinson’s takes your body but leaves your mind intact.” It was neat, easy to remember, and wrong.
Essentially no patients participated in decisions that shaped the funding, research, clinical protocols, and other factors that went into finding better treatments for PD. Patients were the passive recipients of experimental treatments, their reactions assessed to determine whether the treatment met statistical endpoints for improved motor control. Patients were talking monkeys, with their advantages and disadvantages: disadvantages - they liked to talk, couldn’t be kept in cages, and couldn’t be intentionally sacrificed for data retrieval; advantages - they were plentiful and cheaper than monkeys, didn’t require cages and food, and they were the target population, making data assessment more direct.
Much of the credit for the current view of PD as a multi-faceted disease, including cognitive and sensory components, belongs to those talking monkeys who refused to stop talking, and the researchers who realized that to dismiss evidence that did not fit the prevailing clinical paradigm was unsound science. The story of the progress in understanding PD is due in part to the strategic partnerships developed between the scientific and patient communities.
My involvement in what became the Parkinson’s patient advocate movement began as a member of an online bulletin board for PD patients in the late 1990s. There, patients compared notes and found shared symptoms that could not be explained under traditional PD models. The monkeys had begun to think outside the cage, rattling the bars and demanding to be heard.
During this time I also started volunteering with the Parkinson’s Action Network (PAN), which is devoted to advocating for the Parkinson’s community in the federal government. When my involvement in organizing an online petition to the White House on stem cells was noticed, PAN asked me to submit a proposal for a grassroots network advocacy program. The proposal was accepted, and my wife Ann (who also has Parkinson’s) and I were given a grant to travel across the country to recruit patients and their loved ones for the program. We traveled constantly for two years to promote the program, finding hundreds and eventually thousands of ordinary folks willing to play a part in making the voice of the patient heard in Congress.
The contacts Ann and I made during the Grassroots Network recruiting campaign led to our participation in other significant efforts. We testified before the California Legislature to enact the first laws to legalize research utilizing embryonic stem cells. We also helped pass Proposition 71 allocating $3 billion for stem cell research in California.
As other opportunities came along to give a patient perspective, Ann and I rarely said no. We joined up with other grassroots patient advocates to be heard on issues that patients were considered too “naïve” to know had already been settled by science. Cognitive loss, depression, pre-symptomatic olfactory loss, gastrointestinal issues, were raised again and again, and now sympathetic scientists were listening and confirming these concerns with new research.
Today, patient advisory councils, patients on IRB’s, and grassroots patient members of the boards of directors of national Parkinson’s organizations are accepted as routine and necessary. Most patients cannot engage in arcane issues of PD biochemistry. But we are smart people, and we can tell scientists things that they otherwise might never know - like when they stopped being able to smell the roses in their gardens.
Greg Wasson has been an active member of the Parkinson’s community for over 15 years, largely as an advocate with the Parkinson's Action Network (PAN)
- Posted byon March 30, 2015 at 11:38 AM EDT
Deborah W. Brooks is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
When I co-founded The Michael J. Fox Foundation for Parkinson's Research (MJFF) with Michael in 2000, we had one goal: accelerate new treatments and, ultimately, a cure for Parkinson’s disease (PD). We put patients front and center and reached across academia, industries and government. We brought together researchers, technology and clinical study volunteers. And today, there’s an unprecedented level of patient engagement with research efforts, the drug development pipeline is the most robust ever and a cure is that much closer.
More than 1 million people in the United States have Parkinson’s, the second most common brain disease after Alzheimer’s. In 2015, around 60,000 more Americans will be diagnosed with PD, and this number will only increase as the global population ages. Our urgency is shared with these patients and families. We’re honored to include fellow Champion Steven DeWitte in our Patient Council. Their role as advisors on patient priorities and outreach to increase clinical trial participation is invaluable.
We believe that a patient-centric vision and opportunities to take strategic risks are key to progress in finding a cure. So MJFF-funded scientists are studying targets such as the protein alpha-synuclein, which clumps in the brain cells of people with Parkinson’s and has a genetic link to PD. In addition to examining its role in Parkinson’s genesis, alpha-synuclein is the focus of two vaccine approaches in disease-modifying clinical trials.
We’re also investigating mutations in the LRRK2 gene, the greatest known genetic contributor to PD, to advance research in disease onset and progression. Last year our landmark biomarker study, the Parkinson's Progression Markers Initiative, began enrolling people with either a LRRK2 or alpha-synucein genetic mutation.
MJFF is also making strides in meeting the needs of those living with Parkinson’s day to day. Available drug therapies don’t treat all symptoms and can wear off before it’s time to take the next dose. So we invest in research that we believe has the greatest potential to help patients maintain their functionality and comfort longer. In the last 18 months alone, more than a dozen projects with MJFF early-stage investment have garnered promising results leading to additional funding; a number are in clinical testing. The U.S. Food and Drug Administration approved three new drugs for Parkinson’s symptoms in 2014; significant for any medical indication.
Those taking part in research allow these milestones to happen, and MJFF is steadfast in supporting them with up-to-date engagement platforms. We’re working with tech leaders like Intel and Apple to leverage devices that conveniently collect and measure data. We’ve launched Fox Insight, a data-collection study that also serves as a hub to link personal and device data from other studies, from both those with and without PD. Our web-based Fox Trial Finder tool matches people with the clinical trials that need them, both in person and online. The rewards will ripple beyond these individuals to the entire PD community and to our nation.
I am constantly inspired by the commitment the tens of thousands of patients and their families who fund our high-risk, high-impact work, and who participate in clinical research. Only through studying people with and without PD will we find a cure. I am often reminded of Michael’s decision to take action, knowing each person who follows his lead contributes to a cure. While I’m honored to be named a White House Champion of Change, I believe they are the true heroes of this work.
I hope you, too, are inspired to learn more about getting involved. Only together will we reach the day when no one will have to live with Parkinson’s disease.
Deborah W. Brooks is co-founder and executive vice chairman of The Michael J. Fox Foundation for Parkinson's Research (MJFF). MJFF 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.
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