PD Avengers is global group of Parkinson’s advocates who were inspired to take action after reading the book “Ending Parkinson’s” by Drs. Bas Bloem, Michael Okun, Ray Dorsey and Todd Sherer.
Despite the unprecedented advances made in the areas of technology and medicine, Parkinson’s disease remains a source of disability and poor quality of life for the millions of people with PD around the world. With each passing day we, and those that we love, face a future of uncertainty and an increased burden of disease. We know that there are many stakeholders working hard to make Parkinson’s disability a thing of the past, but we are increasingly impatient for progress to be made.
Taking lessons from other disease advocacy efforts, we believe it’s time to organize ourselves and take action. It is important to do whatever we can, to unite on a global level but to act locally, customizing our approach and working closely with appropriate groups to support efforts that are compatible with our mission. Although our tactics and specific projects may change, our objectives are threefold.
Objective 1: First, we believe that all people of the world with Parkinson’s need to have access to proper medications, treatments, information and support. Given the fact that simple dopamine replacement is unavailable at a primary care level to the vast majority of people with Parkinson’s in Africa, is deplorable. The stigma and lack of humane care leads to unbearable suffering for this community, a part of our global PD community. Our first project is to support a member of our founding group’s efforts to address this inequity. Omotola Thomas produced a video “Seven Reasons Why You Should Care” and a call to raise funds to support local efforts in Africa. We have taken on a social media campaign to garner at least 10,000 views. As of July 31, 2020, eight days since we started, the video has been viewed over four thousand times on YouTube and Instagram and that number continues to rise quickly.
Objective 2: By 2022 we hope to unite a global group of one million actively engaged advocates to power forward unified campaigns to raise awareness for our mission of ending Parkinson’s. Our ultimate goal is to grow that number to 50 million voices worldwide, a number taking into consideration not only patients but their loved ones and all other stakeholders. Since the launch of our website and Facebook page on July 12 we have more than 250 pledges signed.
Objective 3: And lastly, we aim to improve meaningful Parkinson’s patient input at every step of therapeutic development which we believe will accelerate the development of treatments directed toward the most urgent patient needs and ultimately a cure.
If you share in our vision, then we ask you and those in your organization to first read and sign the PD Avengers pledge at (www.pdavengers.com). Then consider helping us reach more of our Parkinson’s community by spreading the word to your circle of supporters and asking them to do the same. Also please support us on social media by endorsing our efforts and campaigns.
PD Avengers is not a charity nor are we affiliated with any one organization. Our mandate is to use the value of our combined efforts, influence and skills to vocally advocate to prove Parkinson’s matters and to build a sense of real urgency to end this disease. By partnering with people with Parkinson’s, their partners, families, friends, allies, PD organizations and the health professionals who specialize in Parkinson’s disease, we can use our collective influence to amplify events and projects that are aligned with our vision and mission and help make those endeavors a series of successes which will help reach our shared goal. We hope this is the beginning of a mutually beneficial partnership and look forward to seeing what we can accomplish through the power of collaboration.