IMPORTANT: PD AVENGERS ASSEMBLE! A zoom for all members is Jan 24 at 11a PST

CLICK HERE TO JOIN THE ZOOM

Hello PD Avengers,

We hope 2023 is treating you well.

As you are aware, the PD Avengers is operated with private funds and we do not compete with our organizational partners by holding traditional fundraisers. However, we could use your help. This is something you can do for free that could result in up to $50,000 for the PD Avengers.

All of us in the PD Avengers global alliance community have talents, skills, and strengths to change the course of Parkinson’s disease. These are our superpowers, and when we work together we can accomplish extraordinary things.

That’s why we’re excited to tell you about a great opportunity to expand our collective reach, courtesy of Mediflix.

Beyond healthcare empowerment, Mediflix is also empowering PD Avengers. Between now and March 31, Mediflix will donate funds to PD Avengers for every person who registers and visits its site through the PD Avengers channel.

These donations will go a long way toward helping us further our mission to end Parkinson’s. The sooner a person signs up and the more often they visit, the better for them and the more funds we can potentially receive.

Please click the Mediflix link to the PD Avengers page and register for free.

Through our collective powers, we educate ourselves, live better lives and ultimately stop Parkinson’s in its tracks!

United to end Parkinson’s

Larry Gifford

President, PD Avengers

CONFERENCES

Register Today!

APDA Virtual Parkinson's Conference:

Educate, Empower, Engage

February 15-16, 2023

Click here to view the detailed agenda!

This is a great opportunity to educate yourself (regardless of where you live) about the environmental risk factors in Parkinson's disease and ask questions of two leading experts in the field.

There are many factors that can contribute to an individual's likelihood of developing Parkinson's. Some, like genetics, are outside of our control, while others are modifiable.

In this webinar, hosted by PD Avengers President Larry Gifford, we will hear from leading experts presenting on environmental factors that have been associated with an increased risk of Parkinson's.

They will help us understand how to interpret this kind of research and share the currently available data on factors like pesticides, industrial chemicals, and air pollution. 

SLIM SHAKY is a Parkinson's rap anthem that captures the struggle and the strength of two vibrant women who live with it every day. Learn more

Transforming Parkinson’s Care in Africa (TraPCAf) is a multi-site £3 million grant funded by the UK-based National Institute for Health and Care Research (NIHR). The overall aim of the grant is to transform the landscape of Parkinson’s care and treatment in Africa through research in Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Tanzania.

The project’s key research questions involve: (1) understanding the burden of Parkinson’s across Africa; investigat ing ways to (2) improve diagnosis rates, (3) provide affordable and sustainable treatment through a clinical trial of Mucuna Pruriens, and (4) improve the quality of disease management; (5) establishing genetic and environmental links to Parkinson’s (e.g., related to diet, heavy metals and pesticides); and (6) understanding the lived experience of people with Parkinson’s and their caregivers.

The research team will be working closely with Parkinson’s Africa (a PD Avengers partner), who will be supporting the community engagement and involvement work throughout the four-year grant. This work involving Parkinson’s Africa has already helped shape the research questions and will continue to ensure that the work is guided by people with lived experience on the ground and that the research has real impact.

One important aim of the grant is to establish support groups in each of the study sites, and the team will be drawing on the expertise of PMD Alliance to create a Universal Support Group Guide being developed through the PD Avengers Wellness Committee.

If anyone has any questions about this research, you can get in touch with Tash Fothergill-Misbah who would be happy to discuss this work. (email Tash here)

The team will also be at the WPC in Barcelona, so please come and find our posters and chat to us.

The Research Committee continues to discuss best practices for patient involvement in all stages of research. We are in the process of gathering already published guidelines that outline the ideal way to engage patients in that process and are working towards developing our own charter to share with the research community.

A few Research Committee members have submitted abstracts for the 2023 World Parkinson’s Congress in Barcelona. Eirwin Malin has submitted “Sparks of Experience - Enhancing Serendipity: An initiative of the PD Avenger research committee.” Katsura Suzuki has submitted an abstract looking at the use of Artificial Intelligence in Parkinson’s research and care.  

If you have a particular interest or have expertise in how patients should be involved in research, please contact Marc Van Grieken (marc@mvgla.com), Dianne Bramble (dianne.bramble@gmail.com) or Christine Kakareka (ckakareka@gmail.com), the Research Committee Chair and Co-Chairs.

If you are a woman living with Parkinson’s disease (PD), we want to hear from you — again!



In the past, we invited women living with PD to complete a Fox Insight survey about their unique experience. The responses received will move us forward in our goal of understanding what women around the globe are experiencing across their lifespan when it comes to PD, and what improvements can be made.

Now, we want to learn more about your experience as it relates to menopause. Through this Fox Insight survey, we hope to better understand the impact of a PD diagnosis during specific phases of a woman’s life, and its influence on overall health and quality of life. 

The survey should take 5 -10 minutes to complete. 

Please take part in this landmark study and help shape the future for women with PD.

We are all on this journey together, and it’s important that we begin to get to know each other. We have created a new section in this newsletter to profile a PD Avenger. Each month we will feature a spotlight from a full blog post that will be available on the PD Avengers website. We are starting with members of the newly formed newsletter team. If you would like to be spotlighted please email PDAvengersNewsletter@gmail.com

Getting to know "Orlando Jack"

Why did you want to become a PD Avenger? 

To not only educate myself, but to educate others.

What is something you wish people knew about Parkinson’s Disease?

The emotional and psychological component.

Do you have any PD advice?

As a member of a large social network for PwP’s many seem to accept their malady and don’t seem to want to fight for a cure. That ‘Doer’ attitude is missing. It’s frustrating for me because I’ve never been a quitter whether in sports or life. I wish these PwP’s would be ‘Doers’ also.

January 17 marked the 81st anniversary of the birth of one of the greatest Parkinson’s advocates of all time, Muhammad Ali. In this episode of WHEN LIFE GIVES YOU PARKINSON'S PODCAST, we learn more about the champ’s journey from his eldest daughter Maryum “May May” Ali – the stigma her father dealt with after his diagnosis, when she first noticed changes in her dad, struggles with speaking and medication, and how he improved his quality of life. 

In addition to exploring Ali’s Parkinson’s legacy, Dr. Michael S. Okun (pictured), the head of neurology for the University of Florida Norman Fixel Institute for Neurological Diseases, sheds light on Ali’s PD diagnosis. Okun and two other neurologists, the final three neurologists to treat Ali over the course of many years, published an article in October 2022 to clear up misinformation about his diagnosis. Ali was a young onset Parkinson’s disease patient that responds to Levodopa, which is different than if his Parkinson’s onset was due to his boxing career and punches to the head.