Champions of Change Blog

  • Kids: Our Best Product – Participating in the Champions of Change for Working Families event at the White House

    Rose Marcario

    Rose Marcario is being honored as a Working Family Champion of Change

    It’s an honor to be recognized by President Obama for our commitments to working families. I share this gratitude with Malinda Chouinard, who has always made Patagonia a great place for families, and with Anita Furtaw, who developed an award-winning on-site child development program for our Ventura headquarters 30 years ago, and has run it ever since.

    We’re happy to serve as a model for other companies who want to do the right thing by their employees. It’s a necessary element of doing business in our time. To support our families, Patagonia provides company-paid health care and sick time for all employees, paid maternity and paternity leave, access to on-site childcare for many employees, and financial support to those who do not have access, among other benefits.

    I came to Patagonia in 2008 after working in businesses where I had to relegate my own desire for social and environmental change to nonworking hours. It was my hope, in coming to Patagonia, that I’d be able to engage my whole self as a person and a citizen in my workaday life. But I was also skeptical. I wanted to see for myself whether the company’s values were possible to live by in a competitive business.

    Patagonia’s child-care program was my first visible proof of this possibility and it is still—despite all our work to improve social practices and reduce environmental harm in the supply chain—the most striking.

    Some benefits of onsite childcare are obvious. The children are lively, curious and happy. As Anita Furtaw has said, “When kids are in the same place and have the ability to trust the adults around them to love them and care for them, they have the energy to do what they need to do in all areas of development. They become more articulate and tend to have higher self-esteem.”

    The benefits to the parents and grandparents are also visible: they can see, and be with, their kids during the day and have an engaging work life without sacrificing their lives as parents. Our program also includes traveling caregiver support for those with kids less than a year old.

    One benefit is less obvious: the presence of the children transforms the workplace into a community for all employees. The kids and the sounds of their laughter are reminders that it is the purpose of work to honor our human as well as our business responsibilities.

    Business results from these investments are significant. For example, employee turnover costs companies up to 150 percent of the base salary of the person exiting. An astonishing 43 percent of women with children leave careers or take extended time away from work after having kids. At Patagonia, nearly all employees return to work after a standard parental leave.

    After more than 30 years, we’ve begun to hire quite a few kids who grew up with us. And Anita Furtaw, a tireless champion for our employees and their kids, recently laid the groundwork for a similar center at our facility in Reno to support 400 additional employees.

    We face so many challenges today as citizens and businesspeople. In a changing world, it’s vital to be an agent of change—and to have that capability in the workplace as well as in private life. I’ve been able to realize that possibility at Patagonia, where I can put my heart and soul into my work. The credit goes, in part, to the kids of my talented colleagues who keep us all grounded. Any business that wants that commitment from its people should take note—and follow suit.

    Rose Marcario is the President and CEO of Patagonia, Inc. and Patagonia Works.

  • Working matters. Families matter. Paid sick days matter.

    Melissa Broome

    Melissa Broome is being honored as a Working Family Champion of Change

    It’s an all too familiar story understood by every working parent.  In the wee hours of the morning, you’re jolted awake by the sound of cries on the baby monitor. Sleep deprivation is often an uninvited friend, but this time is different.  The crying is different. Something is wrong.

    We’ve all been there. 

    For me, it was an October morning. My baby girl was not quite 18-months-old.  When I went in to get her, she was clammy with fever and had thrown up in her crib. I knew right away I wouldn’t be going into the office that day. I made the choice to stay home, and thank God that I did. 

    In a matter of hours, my daughter’s fever spiked dramatically, leading to a febrile seizure.  She was in my arms when the seizure happened. She was in my arms during that terrifying ambulance ride to the hospital. She was in my arms when the doctors eventually assured me that she was going to be OK. 

    Nothing can prepare you for the excruciating moments of terror that come when your child faces a health emergency. Yet, looking back on that day, I know that I am one of the lucky ones.  My ample supply of paid sick days meant that I didn’t think twice about staying home with my daughter.     

    For too many working parents across our great nation, this is not the case. When I juxtapose my experience with the experience of moms like Monica in Seattle, I am struck by the similarities and haunted by the differences. Immediately after Monica’s youngest son spiked a fever that led to a seizure, she had to decide to report to work or deal with the repercussions of not getting paid. Her choice was one that no parent should have to make.

    Stories like Monica’s are happening across our country every day.  Hardworking moms and dads have to choose between staying home with their sick children and earning the income they need to keep their families afloat.

    In 2015, we know that in the majority of our country’s households, both parents are working outside the home. And yet, our public policies continue to reflect a 1960s mentality.  We remain the only industrialized country in the world that doesn’t guarantee workers the ability to earn paid sick days.  Forty percent of American workers – more than 43 million people – are denied this basic workplace protection. 

    In my home state of Maryland, more than 700,000 workers are unable to earn a single paid sick day. We launched Working Matters: The Maryland Campaign for Paid Sick Days in 2012. Since then, we have grown to become a powerful statewide coalition of more than 135 businesses, organizations and faith groups committed to passing the Maryland Healthy Working Families Act. The legislation, which was cosponsored this year by nearly 100 members of the Maryland General Assembly, would allow workers to earn up to seven paid sick days per year. 

    While there are many political issues that divide the American people, we are undoubtedly united by an innate desire to care for our families.  Thankfully for Monica, Seattle passed a paid sick days ordinance in 2011. Policymakers in Maryland – and throughout the country – need to follow suit.     

    Melissa Broome is acting executive director of the Job Opportunities Task Force (JOTF) where she helps to lead Working Matters: The Maryland Campaign for Paid Sick Days.

  • Taking Risks in the Name of Change

    Anne Wojcicki

    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.

  • Making a Difference through Parkinson’s Education, Advocacy and Clinical Trials

    Steven DeWitte

    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)

  • Using Technology to Give People with Parkinson’s Specialized Care

    Dr. Ray Dorsey

    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.

  • How to Make a Difference in Parkinson’s Disease Patients’ Lives Today and Every Day

    Michael S. Okun, M.D.

    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.