United to end Parkinson’s

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We are a global alliance of people with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated.

We add urgency to research, wellbeing and advocacy by uniting people and organizations to the cause of ending Parkinson’s. 

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Hello Friends!

What is PD Avengers?

PD Avengers is a 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.

Seven Reasons Why You Should Care

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 4,000 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.

Why 50 Million Voices? 

By Gary Shaughnessy

At one of our first PD Avengers calls, someone made the point that people do not really care about Parkinson’s, because there are not enough of us. 

Sadly, this just is not the case. The reality is there is there are plenty of us. We are just quiet. 

Across the world today there are 10 million people who have been diagnosed with Parkinson‘s. We know from our own experiences, there are many more who have the condition and do not know what it is, do not want to know yet or do not have access to the experts that would let them know.

Living with Parkinson’s 

On average, each person with Parkinson’s has 4 direct family members who share the challenge and the burden of this condition – a partner, sisters, brothers, parents and children.. Each one living with the realities of a Parkinson’s diagnosis and dealing with the consequences and challenges of the disease every day.  That is at least 50 million people directly affected. If you consider Parkinson’s is a life mission for countless neurologists, nurses, therapists, researchers and countless professionals the world over and factor in that Parkinson’s disease is the fastest growing neurological condition in the world, the 50 million quickly becomes 60, 70 or 80 million people impacted – each with a voice that needs to be amplified and to be heard.

We need all of your voices to join the PD Avengers.

50 million is a lot people. It’s slightly more people than the population of Spain or Argentina, almost one-and-half times the population of Canada and double the population of Australia. With 50 million voices supporting and advocating for more urgency and money to be invested into more and better treatments, to establish global standards for diagnosing, treating and living with Parkinson’s disease and for establishing new protocols for research as global forces unite to end the disease. With 50-million voices, no one would question our right to a voice.

Losing our Voice

When I was diagnosed six years ago, I immediately felt that I mattered just a little less and by coincidence my voice actually got just a little quieter every year. This is a common consequence of Parkinson’s. I have been lucky. With the support of colleagues, friends and family, I have felt my voice and my influence come back again.  For many of us that just is not the case.

And it is even worse than that. Millions of people with Parkinson’s across the world do not even have the access to the medication that the rest of us take for granted. Purely because of where they were born.  In the developed world, we talk about the search for a cure. In the developing world even the mainstream drug treatment, which was created before Neil Armstrong reached the moon, is unavailable to all but a few. A 2004 report by the World Health Organization found 40% of countries lacked access to levodopa. The same applies to the benefits of broader support from diagnosis and neurologists to information about how to live your best live with the disease with wellness techniques like exercise, diet, and mindfulness.

This cannot be acceptable.

It is more than 200 years since James Parkinson discovered the “shaking palsy” that now bears his name. We know very little about what causes it, but we do know that less than 10% of cases are familial, meaning to be passed down through generations of family members.  

We have to be a voice for the 50 million until they too feel their voices getting louder again

Already, the PD Avengers have assembled voices from across the world to loudly advocate for the 50 million. We want to be a voice for every one of them. Not just the few. Already, we are seeing the advocates multiplying. In the first two weeks, after publicly inviting people to join the PD Avengers, we have gone from 15 members to more than 250. If we increase 16% every two months instead of every two weeks, we will reach a million voices for ahead of our goal. But to do this, each of us who took the pledge and became a PD Avenger can and must engage others. Together we will have one million advocates talking loudly and urgently by 2022.

That is one of the PD Avenger’s objectives.

One million voices by 2022 will give the PD Avengers an influential voice. We will be using that voice to advocate for urgency, awareness and more resources for research. Urgency. It’s been a major missing ingredient in Parkinson’s campaigns of the past.

Urgently, we need to address the appalling iniquities of how people with Parkinson’s are treated around the world.

Urgently, the scientific community must engage people living with Parkinsons and let us be partners in the way solutions are developed for us.

Urgently, we must take action to ban human caused triggers for Parkinson’s disease. The book Ending Parkinson’s notes that this solvent is used in washing away grease, removing spots in dry cleaning, and until the 1970’s it was used in the process to decaffeinate coffee.

Doctors Ray Dorsey and Bastiaan Bloem

The four authors, Ray Dorsey MD, Todd Sherer, PhD, Michael S. Okun, MD and Bastiaan R. Bloem, MD, are the original PD Avengers and are the inspiration for our group. They cite that this pesticide is so toxic 32 countries have banned it, but that it remains in wide use in the United States and elsewhere. They also highlight a study showing incidence of Parkinson’s in farmers and other users of Paraquat as up to two-and-a-half times the level of those who didn’t use it.

Since my diagnosis, I have met many inspirational and resilient people from across the Parkinsons community. I am privileged to call many of those people my friends. Our friendships across the world and our mission to end Parkinsons is an honour to be involved with and I know that the advocates will grow. Earlier in COVID-19 lockdown, friends shared their greetings in languages from across the world to show how connected we can be. I have shared that video here as it reminded me of just how impactful a simple idea can be if we all get behind it – using our own words, but together. 

Time to act

Wouldn’t it be brilliant to give 50 million people their voice? We can show that people living with Parkinsons are people with lives to live, families who love them and professionals who want them to live despite their diagnosis. We can also show that Parkinson’s is a global menace that is not just a tremor, but a long, slow, sometimes painful, always uncomfortable, degenerative disease that is expanding at an alarming rate.

Parkinson’s does not define us, our actions do. It is time to act.

Reflecting on Inequality

Reflecting on Inequality by Soania Mathur

This is why I feel diversity and equity in the world and without exception in the Parkinson’s community at all levels is important. And this is why I am part of the PD Avengers.

Milestones and Momentum in Parkinson’s Research – About 20 Years M. J. Fox Foundation