Steeping Hope: PDTEA's Journey from Argentina to Parkinson's Relief

Embark on a remarkable exploration of PDTEA, a specially blended tea that began as a chance discovery on a cycling path in Argentina. Combining ten purposeful ingredients, each aimed at alleviating Parkinson's symptoms, this brew is gaining accolades from those who have experienced its benefits. Learn how PDTEA's creator, Lloyd Taylor, is sharing this innovative solution with others and supporting the broader mission to end Parkinson's through a partnership with the Michael J. Fox Foundation.

PDTEA – Every drop helps.

In the northeast corner of Argentina, there is a cycling path that winds its way into the high hills. The surface is hard packed, but uneven. The heat of the mid-day sun is relentless although the landscape is lush, and the vistas are rewarding.

In the summer of 2022, a friend of mine was on this path, part way into a multi-week cycling trip. He was battling fatigue, elevation, temperature, and the symptoms of Parkinson’s disease. Stopping at a rest hut, he was served a hot mug of local tea. The taste was unpleasant, but he felt energized. He began seeking out the tea. He began feeling better and his symptoms improved.

My wife and I saw him the week he returned to Canada, and we were both struck by how good he looked. I asked what was new in his routine, and his answer was immediate... the tea. I started drinking it myself and felt my own PD symptoms ease. Intrigued, I began doing research and found medical evidence supporting what I was experiencing. I was excited, but there were a few problems. The format of the tea made it awkward to consume. The bitter taste wasn’t growing on me, and our small Argentinian supply was dwindling.

I looked for a solution and found it in my own backyard. My neighbour of twenty years is one of Canada’s leading tea merchants. Once I explained the effect the tea was having on my Parkinson’s, he jumped into the project. His team prepared a dozen blends for testing. We nicknamed the project Parkinson’s Disease tea – PDTEA for short.

PDTEA contains ten all-natural, organic ingredients, each one focused on a symptom of Parkinson’s, Dopamine production, cognitive functions, anxiety, energy, inflammation, and digestion. It’s rich in vitamins, minerals, and antioxidants. It’s packaged in biodegradable sachets and blended in a state-of-the-art facility powered by renewable energy. And I’m happy to say, it tastes nice. It has an earthy flavour that provides me comfort all on its own.

I’ve shared PDTEA with my local Parkinson’s community and the response has been overwhelming. 

PDTEA clears the fog. – Peter

I’ve added PDTEA to my routine. I feel great. Even my handwriting has improved. – Rick

PDTEA gives me an energy boost without jitters or crash. I love it. – Steve

A friend introduced me to PDTEA. From the first sip I was hooked. The taste is great, and it has a positive effect on my PD symptoms. – Jim

PDTEA relaxes me and helps with stiffness. – Sharon

I created PDTEA for my own consumption and my immediate Parkinson’s community. But through our partnership with PDAvengers we can do much more. I encourage you to visit PDTEA.com and add your name to our waitlist to experience the benefits for yourself.

We also realize that along with bringing relief to people living with Parkinson’s, we can help advance the search for a cure. We are excited to announce proceeds from PDTEA are directed to the Michael J. Fox Foundation through Team Fox.

As a busy entrepreneur, husband and father of three, I consider myself a fortunate person. I can say that in some respects, the disease has given me more than it has taken. The disease has introduced me to a community of people who find a way to live their best lives despite the obstacle of Parkinson’s. The course of their lives has been altered by the disease and they have chosen to find new paths; sometimes better than the ones they were on.

Being diagnosed with Parkinson’s altered my own life path and I have relied on the Parkinson’s community for support. PDTEA is my opportunity to give back. I intend to use my energy and my experience to bring as much relief as I can.

Please join me.

Every drop helps.

Lloyd Taylor

Founder and Head Tea Drinker
Diagnosed with Parkinson's 2020

Prescription for Action; From Passivity to Progress

Since 2010, the Michael J Fox Foundation has been running the Parkinson's Progressive Markers Initiative, and after thirteen years of pokes, prods, tests and spinal taps, scientists have discovered a biomarker in spinal fluid for Parkinson's. Without the selflessness of more than one-thousand volunteers, it would not have been possible.

Volunteers in the Parkinson's community are remarkable people who embody generosity, compassion, and kindness by giving their time, skills, body fluids and big hearts to make a difference in the lives of people with Parkinson's disease.

In March 2020, the book Ending Parkinson’s Disease: A Prescription for Action was released. The book offers a clear pathway forward. The first of 25 action items is to ban Paraquat, the second is to ban Trichlorethylene.

“I am only one, but I am one. I can’t do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.”

— Edward Everett Hale, author & chaplain

Thanks to volunteer advocates who wrote the White House in 2021 during the PD Avengers and Ending Parkinson’s Disease book authors “red letter campaign,” change is underway. 50,000 people asked the Biden-Harris Administration’s EPA to ban the insecticide Chlorpyrifos (read the Intercept investigation), the herbicide Paraquat (read The Guardian investigation) and the toxic chemical Trichlorethylene (read investigation by Newsday).

Since that campaign, the use of Chlorpyrifos has been banned on all edible crops. Scientific research has been documenting the harms of chlorpyrifos for decades. Yet it was the lived experience, community expertise, and community organizing of farmworkers and their families that galvanized momentum at the local, regional, and state levels that led to the federal chlorpyrifos ban. For decades, chlorpyrifos has been widely sprayed on Washington apples, pears, Christmas trees and other crops including soybeans, fruit and nut trees, broccoli, and cauliflower.

Due in part to years of effort by Parkinson’s advocates nationwide — including amassing more than 100,000 signatures on a petition to the Environmental Protection Agency (EPA) and logging tens of thousands of emails and phone calls to Congress — the EPA has agreed to reconsider the evidence that Paraquat causes brain damage and other harm. This could lead to the chemical being banned in the United States, as it already has been in more than 50 other countries. Additionally, The Michael J. Fox Foundation has started to petition individual states to ban Paraquat. And several groups, including the Michael J. Fox Foundation for Parkinson's Research, filed a lawsuit against the US Environmental Protection Agency (EPA) over its decision to renew approval for the herbicide paraquat.

Trichlorethylene (TCE) has been deemed an unreasonable risk of injury to human health by the U.S. EPA. The main use of trichloroethylene is in the vapor degreasing of metal parts. TCE is also used as an extraction solvent for greases, oils, fats, waxes, and tars, a chemical intermediate in the production of other chemicals, and as a refrigerant. Trichloroethylene is used in consumer products such as typewriter correction fluids, paint removers/strippers, adhesives, spot removers, and rug-cleaning fluids. Trichloroethylene was used in the past as a general anesthetic, as an inhaled obstetrical analgesic in millions of patients, When it was first widely produced in the 1920s, trichloroethylene's major use was to extract vegetable oils from plant materials such as soy, coconut, and palm. Other uses in the food industry included coffee decaffeination and the preparation of flavoring extracts from hops and spices. It has also been used for removing residual water in the production of 100% ethanol.

Of the 25 action items outlined in the Ending Parkinson’s Disease book there is much work to be done, however there seems be some movement in most of the 25 action items. What will you tackle next?

GREEN THUMB = FORWARD MOMENTUM | YELLOW THUMB = NO MOVEMENT | RED THUMB = BACKWARDS MOMENTUM

PREVENT THE DIESEASE

Ban Paraquat and other toxic herbicides and pesticides. Paraquat has been banned in over 50 countries, with nearly 20 additional countries joining the list since publishing the book. In 2023, Canada became the latest country to ban Paraquat when the manufacturer discontinued the last remaining product containing Paraquat permitted for distribution. As a result, Paraquat products are no longer in use in Canada.

Ban Trichlorethylene. Two states, Minnesota and New York, have banned TCE since the publication of the book. In Europe, Trichlorethylene (TRI, Trike) has been classified as a class 2 carcinogen since 2016 and has been banned, with a few exceptions. The largest global consumer of TCE, accounting for almost half of the annual consumption of 151 kilo tons, is East Asia, mainly China.

Accelerate the clean up of contaminated sites. Cleanup durations have increased over time. In 1984, it took 2.4 years; by 1996, it was 10.6 years. The US National Priorities List had 1,346 contaminated sites in 2018, reducing slightly to 1,336 by March 2023. The Biden-Harris Administration invested $3.5 billion in the Superfund Remedial Program, restored Superfund chemical excise taxes, and updated the list biannually, making it one of the most significant investments in US history to address legacy pollution.

Use a water filter. To safeguard your health while we wait for water clean-up, consider using a water filter. Carbon filters that can be attached to your faucets or water pitchers are a cost-effective option, but it's important to replace them regularly. Keep in mind that while they can help remove some contaminants, they may not extract every chemical from the water. Helpful resources: EPA Safe Drinking Water EWG’s Tap Water Database

Advocate for the CDC’s National Neurological Conditions Surveillance System. The CDC’s timeline was disrupted by COVID, but is finishing stage 2 of 3. It has been working on establishing and strengthening partnerships with professional and non-profit organizations to ensure representation of the needs and perspectives of PD and MS patients and caregivers. They have also collaborated with various organizations to catalog existing registries and data collection efforts that could be involved in research and improving prevention and patient care based on NNCSS findings. The CDC has also expanded its scientific expertise by engaging with experts from national institutes and establishing fellowship mechanisms to secure specialist expertise for PD and MS. The CDC has produced surveillance estimates for MS and PD by assessing the state of science and selecting the most useful and accurate definitions for identifying cases of PD and MS. They have also proposed approaches for maintaining and extending NNCSS to include surveillance for other neurological conditions. Explore the CDC’s NNCSS website here.

***Last Updated on April 19, 2023***

• Protect Coworkers.

• Eat like the Greeks.

• Minimize your consumption of pesticides.

• Sweat.

• Avoid activities with high risk of head trauma.

ADVOCATE FOR ADDITIONAL RESOURCES AND POLICY CHANGES

• Increase NIH funding for Parkinson’s disease.

• Listen up, Big Pharma — this is a great business opportunity.

• Donate to organizations that invest in important research and care.

• Be loud.

• Organize.

CARE FOR ALL THOSE WHO ARE AFFECTED

• Train more specialists and educate clinicians.

• Expand access to care.

• Lobby to change insurance and Medicare.

• Enable individuals with Parkinson’s to live at home.

• Use technology to increase access to care.

TREAT PARKINSON’S DISEASE WITH EFFECTIVE THERAPIES

• Make dopamine-replacement therapy more widely available.

• Participate in clinical trials.

• Take research studies to participants.

• Study people with early disease symptoms and those who are at greater risk.

• Provide reasonable price of Parkinson’s drugs.

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VIDEO: Is Trichlorethylene an
Invisible Cause of Parkinson’s?

Professor Ray Dorsey, MD
and Larry Gifford, PD Avengers

Standing Strong Against PD with Incredible Force!

1.1 Million Sit to Stands!

On World Parkinson's Day, participants from 13 countries joined the "Stand up to Parkinson's" campaign to collectively complete 1,102,058 sit-to-stands over a 24-hour period, surpassing their goal of 1,000,000. The sheer number of people involved and the magnitude of the accomplishment is something to be celebrated and acknowledged.

Assuming the sit-to-stands were completed evenly over 24 hours, we can calculate the average wattage produced by the group. If each sit-to-stand burns around 4 calories, then the group would have burned around 4,408,232 calories in total, which is equivalent to 4,408 kilocalories or 18,426 kilojoules of energy. To put this into perspective, this amount of energy is roughly equivalent to the energy required to power an average 60-watt light bulb for 307 hours, or 12.8 days. It is also equivalent to

1. Boiling 4,400 cups of tea

2. Charging a smartphone 12,000 times

3. Running 4.4 marathons

4. Biking for 550 kilometers

But what if all that energy was used at the same time? The amount of power that would be generated is truly awe-inspiring. A power jolt of 18,426 kilojoules is equivalent to the energy released by detonating approximately 4.4 pounds (2 kilograms) of TNT.

It's also equivalent to the kinetic energy of a car traveling at 100 miles per hour (160 kilometers per hour) or the potential energy stored in a 440-pound (200-kilogram) object, for instance an adult lion or a motorcycle, lifted to a height of 87.5 feet (27 meters) above the ground.

The Stand up to Parkinson's campaign is a testament to the power of collective effort and determination. It's also a reminder of the incredible amount of energy our bodies are capable of producing through physical activity. Let's celebrate this accomplishment and continue to push ourselves to new heights.

It's also equivalent to the kinetic energy of a car traveling at 100 miles per hour (160 kilometers per hour) or the potential energy stored in a 440-pound (200-kilogram) object, for instance an adult lion or a motorcycle, lifted to a height of 87.5 feet (27 meters) above the ground.

The Stand up to Parkinson's campaign is a testament to the power of collective effort and determination. It's also a reminder of the incredible amount of energy our bodies are capable of producing through physical activity. Let's celebrate this accomplishment and continue to push ourselves to new heights.

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Nakagata, T., Yamada, Y., Hatamoto, Y., & Naito, H. (2019). Energy expenditure of a single sit-to-stand movement with slow versus normal speed using the different frequency accumulation method. Medicina (Kaunas), 55(3), 77. https://doi.org/10.3390/medicina55030077

PARKINSON’S DISEASE: THE FASTEST GROWING SUPPORTING CHARACTER IN HOLLYWOOD

No Sign of it “Shrinking” from the Spotlight

Credit: Netflix, AppleTV+, Amazon Studios, 20th Century Fox, FilmNation Entertainment, 30West, Imperative Entertainment, 3 Arts Entertainment, Kaling International, CBS, Nano Chameleon, Automatik Entertainment, Scott Free Productions, Netflix International Pictures, Flying Studio Pictures, Panic Pictures, Blue Light, World Productions, ITV, Fox 2000 Pictures, Regency Enterprises, New Regency, Stuber Pictures, Bedford Falls Productions, Dune Entertainment, 3 Chance Productions, Corporate Mandate, Doozer Productions, Warner Bros. Television

By Larry Gifford

April 11, 2023

In recent years, Parkinson's disease (PD) has become a prominent feature in Hollywood, with many actors playing characters with the disease on both the big and small screens. From movies like Late Night and Mank, to shows such as Shrinking, Kaleidoscope, and The Good Wife, actors such as Harrison Ford, John Lithgow, and Jamie McShane have taken on the challenging roles of characters with PD.

Attitudes on Representation on TV Study, April 2022 © 2023 The Nielsen Company (US) All Rights Reserved

What is the reason for the sudden increase in PD representation in Hollywood?

PD has become the darling of Tinseltown due to the disease itself, which is currently the fastest growing neurological disease in the world, affecting over ten million people globally. It is the second most common age-related neurodegenerative condition worldwide, just behind Alzheimer's disease. Recent research in North America has even revealed that PD is 50% more prevalent than previously thought.

While PD is a rising supporting character in Hollywood, its prevalence in real life is becoming more and more pronounced. This has led to increased awareness and support for Parkinson's research and advocacy groups. Earlier this year, actor Ryan Reynolds, whose father died from complications of Parkinson’s, lent support for the AppleTV+ debut of Michael J. Fox’s documentary about his career and Parkinson’s, Still: A Michael J. Fox Movie.

I lost my dad to Parkinson’s so besides @realmikefox being a friend, role model, generational talent and Canadian, I cannot wait to see ‘Still’ on @AppleTVPlus. It’ll soon reside on the MJF anthology DVD shelf in my heart. Btw, The Frighteners is criminally underrated. pic.twitter.com/mMsBndjTAP

— Ryan Reynolds (@VancityReynolds) January 21, 2023

Getting it Right: The Challenge of Portraying Parkinson's

Portraying Parkinson’s in a respectful and believable way is a challenge. How does a show or an actor properly portray someone with a degenerative, progressive, brain disease? It's not easy.

When Grey’s Anatomy performed a breakthrough stem-cell procedure and “cured” Parkinson’s in April 2022, many people with Parkinson’s thought that in fact this was a cure. However, WebMD was among those who quickly pointed out that this was not the case.

Finding a fictional cure for Parkinson’s, no matter how possible in the long term, could be a dose of hope we all need. However, by creating a fictitious cure for PD it may only confuse the general public and possibly negatively impact the urgent need of research funds from public and private sources.

Credit: © World Productions

Bringing authenticity to the portrayal of Parkinson’s disease was of utmost importance to Irish actor Aidan Turner and the production team of the new television drama series The Suspect. Turner plays the lead character, Dr Joe O’Loughlin, a clinical psychologist who is diagnosed with early onset Parkinson’s. To accurately depict the condition on camera, Turner and the production team consulted with the charity Parkinson’s UK, which put them in touch with Drew Hallam, a musician diagnosed with Parkinson’s in 2018. Hallam’s input was critical in guiding the team on how to display the symptoms of Parkinson’s on screen while keeping them realistic.

The inclusion of a character with Parkinson’s in the hit Netflix series Kaleidoscope has drawn attention from the Parkinson’s community. The New York Times gushes, “Giancarlo Esposito’s performance in Kaleidoscope (as Leo Pap) derives much of its power from its humility, especially once (his character) breaks out of prison. We see him become increasingly frail, confronting his disease and a life full of regret.”

Credit: Netflix

As Kaleidoscope continues, we can see that Esposito really honed in on some of the true-to-life symptoms that come with Parkinson's disease. The hand tremors, spasms, slowed movement, and difficulty walking were all portrayed quite accurately. However, I can't help but point out that there's one glaring inaccuracy in the way Parkinson's is depicted in the show.

When sharing his diagnosis with a colleague, the character with Parkinson’s says he is unsure if he has “2 years or 10 years to live.” While Parkinson’s is incurable, it is not considered to be a terminal illness. The concern is the potential negative impact it can have on people's understanding of the condition. With someone being diagnosed with Parkinson’s approximately every six minutes, we need to be sure information about Parkinson’s on TV and in Movies is reflective of reality.

It is a surprising imperfection as Esposito seems to fully embrace the characters struggle, describing his character this way, “He has the brain skill, but the body’s going. In a way, that’s the tragedy of our lives. As we get older, we get more delicate and we get more fragile. I still have the brain and the sense of a younger man, but to think, ‘I have to be careful stepping off that curb,’ it’s a bitch.”

The Importance of Inclusion

There are some great examples of people with disabilities and chronic illness playing characters with disabilities and chronic illness. Some great examples include Michael J. Fox playing Louis Canning, who has Parkinson’s, on The Good Wife, RJ Mitte, who has cerebral palsy, playing Walter White Jr. who also has CP in Breaking Bad, and Lauren Potter, who has Down’s syndrome, playing the school’s head cheerleader in Glee.

Regardless, these examples are hard to come by. A recent Nielsen study completed in 2021 found that 95% of disabled parts are performed by able-bodied actors.

Attitudes on Representation on TV Study, April 2022 © 2023 The Nielsen Company (US) All Rights Reserved

When actors without disabilities play characters with disabilities, it is commonly referred to as "cripping up" by critics. The term originally referred to able-bodied actors pretending to have physical disabilities, but now it also encompasses non-disabled actors playing roles with mental illnesses or intellectual disabilities, as well as neurotypical actors playing characters on the autism spectrum.

Interestingly, actors who portray characters with disabilities have a higher chance of winning Academy Awards. Over the past 35 years, almost half of the Best Actor and Best Actress winners have played characters with physical or emotional disabilities. With this in mind, 80 members of the entertainment industry wrote an open letter in 2021, urging for greater prioritization of disability representation in diversity and inclusion plans.

Although it's encouraging to see more attention being given to disability representation, it's important to ensure that the portrayals are respectful and accurate. This is especially important for conditions like Parkinson's disease, which is increasingly depicted in film and television. To achieve authenticity, it is necessary for actors to consult with people who have firsthand experience with the condition or to even consider hiring an actor with Parkinson's for the role.

Starting in 2024, the Academy of Motion Arts and Picture Sciences will introduce new standards for representation that films must meet to qualify for an Oscar in the Best Picture category. These standards include On-Screen Representation, Creative Leadership, Industry Access and Opportunities, and Audience Development.

Disabled characters are often portrayed in two problematic ways: as inspiring heroes who have "overcome" their disability or as objects of pity or ridicule. By prioritizing accurate and respectful disability representation, Hollywood can promote awareness and support for research and advocacy groups while breaking down harmful stereotypes and biases.

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ACTORS WHO HAVE PORTRAYED CHARACTERS WITH PARKINSON’S

Still: A Michael J. Fox Movie
Streaming May 12, 2023 AppleTV+

1. Michael J. Fox* - Louis Canning, The Good Wife (2010-2016)

2. Harrison Ford - Dr. Richard Walker, Shrinking (2022)

3. John Lithgow - Walter, Late Night (2019)

4. Barbara Hershey - Judith, The Manor (2021)

5. Aidan Turner -Dr Joe O'Loughlin, The Suspect (2022)

6. Giancarlo Esposito - Leo Pap, Kaleidoscope (2021)

7. Eddie Marsan - Terry Donovan, Ray Donovan (2013-2020)

8. Jamie McShane - Shelly Metcalf, Mank (2020)

9. Anne Hathaway - Maggie Murdock, Love and Other Drugs (2010)

10. Alan Alda* - Bert Spitz, Marriage Story (2019)

*Diagnosed with Parkinson’s

PD Avengers Member Spotlight

Ellen Bookman

When were you/loved one first diagnosed?

The journey began January 29, 2018.  I was 52. . 

Can you tell the story of your path to diagnosis?

Lee, my husband of 33 years, and I had just started to kayak.  We both loved everything about the experience and would try to as often as possible. I started to notice that my left foot was bothering me. If asked, I would have said that “it felt crampy. My doctor told me to cut down on Splenda.”  

I walked out and thought nothing of it - for three years.

What I thought was nothing turned out to be dystonia. I also had other issues all emanating on my left side.  Nobody put two and two together until a random yearly physical exam with my GP.  I, once again, tried to explain my foot issue. He asked me to make an appointment with the neurologist in the practice.                   . 

I made the appointment and met a young, smart and empathetic doctor who delicately told us that I had Parkinson’s. She wanted me to get a second opinion.  I ended up at one of the country’s top Neurology Centers.  It didn’t matter because this doctor did not have a shred of  empathy.  Lee and I knew we had made a big mistake.     

Why did you want to become a PD Avenger?

Larry Gifford and I met officially when I was a guest on  “When Life Gives You Parkinson’s.” He asked thought provoking questions about my YOPD diagnosis. Because of Larry, I was able to speak about the diagnosis. I got my voice back.  When Larry told me about PD Avengers, I jumped in with both feet. I knew this was going to be big,  

What do you see is your superpower as a PD Avenger? 

I am a writer by trade and always use definitions to make a point. The definition states - your unique force or contribution – something that gets the best out of you.  

My superpower is the ability to put people at ease, so they, too, can get their voice back.

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

Mental wellness is as important as the medical management of the disease. It was never mentioned to me nor did she tell me that stress and anxiety exacerbate symptoms. Had the doctor told me this, I would have immediately sought treatment. Instead, I sat on the couch anxious and depressed for three months. 

What do you like to do for fun?

I decided that I was going to only do those things that give me joy. My dogs. I am training for my 2nd horse show - number one on my bucket list. I started playing pickleball. I box in a Parkinson’s group with people who get me.  Travel. Concerts. The outdoors. 

What advice would you give to someone who is newly diagnosed?

1. Only go to reputable Parkinson’s websites.

2. Advocate for yourself. 

3. If you don’t click with your doctor, find a new one.

4. Ask questions.   

5. Take your Mental Wellness seriously. 

What do you wish you were told when you were diagnosed?

I wish she would have given me more than a pamphlet

I wish she would have told me  about the importance of taking care of my mental wellness.

I wish I was told it will be alright. We will work through this together. 

Is there anything else you would like to share with our community?

Learn about the disease but know that you will not have all of the symptoms. Let knowledge guide you and only from reputable resources. Don’t freak out. Get involved. Help others. Advocate for yourself. Become a mentor.

Do you have any PD hacks to share?

1. Allow yourself to have a bad day,  Then, get up.

2. Exercise. Exercise. Exercise.

3. Do things you love.

4. Understand and acknowledge the role your care partner plays in your life.

Six Action Steps to Address Global Disparities in Parkinson Disease

A World Health Organization Priority

Publication Alert! PD Avengers help write article for JAMA

WEBINAR: WHO and PD Avengers Founders
Larry Gifford and Sania Mathur (click image)

3 Minute Test to Diagnose Parkinson’s Disease

Joy Milne is known the world over as the woman who can smell Parkinson’s. PD Avengers President Larry Gifford talked with her and Professor Perdita Barron, the Director of the Michael Barber Centre for Collaborative Mass Spectrometry at The University of Manchester, who’ve been working side by side hand to nose for years identifying what exactly it is that Joy smells and if it can be used as a way to diagnose Parkinson’s. A paper released today, just after midnight September 7, 2022 (British Summer Time) The charities Parkinson’s UK and the Michael J. Fox Foundation as well as the Royal Society funded this research led by the University of Manchester, which has studied the sebum from people with and without Parkinson’s. Our work is on-going, and our trial has now recruited over 2000 patients.

Read the Research.

Listen to the Podcast.

PD Avengers Member Spotlight

Orlando Jack

When were you/loved one first diagnosed? 

2018

Can you tell the story of your path to diagnosis? 

My left foot big toe started twitching. Consequently, I had an MRI which showed nothing. Then a  ‘DatScan’ which indicated I had Parkinson Disease. I started taking Sinemet immediately.

Why did you want to become a PD Avenger? 

To not only educate myself, but to educate others.
What do you see is your superpower as a PD Avenger? 

My ability to communicate.

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

The emotional and psychological component of this disease. 

What do you like to do for fun?

Musician, Photographer and to raise money for Parkinson’s research

Advisory Board Member, Parkinson Association of Central Florida (www.parkinsoncf.org). 

What advice would you give to someone who is newly diagnosed?

Never stop educating yourself and stay healthy via mental and physical exercise.

Lastly, educate others.

What do you wish you were told when you were diagnosed?

I was fortunate, after I moved to Orlando FL. because I found a very competent MDS Neurologist who is also a member of our association. Dr. Anwar Ahmed is aso very communicative in person and through our ‘Portal.

Is there anything else you would like to share with our community?

Stay Active Mentally and Physically to help fight to slow down the progression.

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.

Today, I’m running my own campaign to get PwP’s to contact their state congressman via the Michael J. Fox Foundation at  https://michaeljfox.quorum.us/campaign/42447/ !

PD Avengers Member Spotlight

Diana Steiner

When was your loved one first diagnosed?

My father-in-law was diagnosed in his late 70’s, almost 10 years ago.

Can you tell the story of his path to diagnosis?

Diagnosis came after much investigation into significant, unexplained weight loss. It took quite some time to get from “undetermined stomach problems” to Parkinson’s. The absence of two hallmark symptoms, tremor and loss of smell (it was lost years ago as a result of an accident), made the diagnosis a surprise for everyone!

Why did you want to become a PD Avenger?

To encourage advocacy and education. The importance of teamwork must be promoted. Many, including PwP, care partners, medical professionals and government officials do not recognize the significant positive effect a good team has on wellbeing. Until Parkinson’s is eradicated, we need to work to improve the quality of life for everyone touched by Parkinson’s!

What do you see is your superpower as a PD Avenger?

I’m a planner by personality and career but my attention to detail and determination are my superpowers. A plan assists in determining progress and evaluating if adjustments are warranted. The power of a plan is diminished if there isn’t someone with the determination to monitor and see it through!

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

Not everyone with Parkinson’s has tremor and not everyone with tremor has Parkinson’s. Essential tremor runs in my mom’s family, so while people assume she has Parkinson’s, they don’t recognize it in my father-in-law.

What do you like to do for fun?

I love to spend time with my husband as he experiments in the kitchen and to escape in a good book. We also love to travel and experience new places. Spending time outdoors, in the quiet, is always rejuvenating.

What advice would you give to the family of someone who is newly diagnosed?

Advocate for your loved one. Ask for and search out as much information as you can, from reputable sources. Do not go down internet rabbit holes! Help your loved one build a support team. This can include support groups, other PwP, and various health care professionals. This is especially important for those diagnosed later in life, rural residents and those who are not technologically savvy as they may experience additional barriers to obtaining information and care. 

What do you wish you were told when you were diagnosed?

Share the news of your diagnosis, don’t hide it! Join a support group or find someone on the Parkinson’s journey to talk to. Reach out for and accept support; this is a life-changing diagnosis but being surrounded by a team will make it easier for everyone.

Is there anything else you would like to share with our community?

Communication is essential! Talking about PD is part of, and will improve the journey.

Join the PD Avengers Strava and Zwift Clubs!

By Rob Warner

Exciting news! Now you can exercise and promote the PD Avengers.  You can now be an advocate simply by exercising under the PD Avengers name.  How can I do this you may ask? By tracking your exercise on Strava and joining other PD Avengers on the most popular indoor cycling/running app in the world on Zwift. We now have a PD Avengers club on each of these popular platforms! 

STRAVA

Strava is a free app you can download on Google Play or the App Store and it is free to join, Premium membership gives you more perks of course but you don’t need it to join the PD Avengers club.  Strava is an internet based company that allows people to track physical exercise while incorporating social network features. It is mostly used for cycling and running using Global Positioning System data. Although it is mostly used by cyclists and runners you can easily track dozens of other activities from alpine skiing to windsurfing.  Once you’ve established your free account you can click on the following link to go to the PD Avengers club page to sign up and start tracking your fitness along with other PD Avengers!

https://www.strava.com/clubs/pdavengers

I plan on adding challenges for our club to keep it fresh and create more excitement about the PD Avengers. No worries, the challenges won’t be crazy like riding 5000 miles in a month but will be more like riding for 4 hours in a month or similar type challenges.

ZWIFT

If you want to ride alongside and converse with your favorite PD Avenger 20 miles or 3000 miles away look no further than Zwift!  Zwift was chosen by cyclingweekly as the best 5indoor cycling app for riding with others and Outdoor magazine said, “Zwift [has] transformed indoor cycling” and, “has changed the way we run and ride”.

Zwift is a subscription based application that costs USD $14.99 per month. Zwift is a  multiplayer online cycling and running physical training program that enables users to interact, train, and compete in a virtual world. You can compete against others of your skill level, follow a training plan along with many other cool features that you will learn as you go along. The greatest part of Zwift for me is being able to ride with my brothers who live over 500 miles away and we can ride at our own pace but still stay together.  My non-Parkie brother is faster than my older brother and I but we can still hang with him via a cool feature from Zwift that “rubberbands” you together regardless of your pace.  

Zwift is a little more complicated to set up and you will need an indoor cycling setup, a laptop,iPad, or cell phone and probably a fan if you sweat as much as I do! 🥵It seriously makes indoor cycling fun and I am able to do it at my own pace, on my own schedule, and in any weather.  

I have started a Zwift club for PD Avengers as well. If you are currently a Zwifter and know how to find a club it is the PDAvenger club (all one word).  If you don’t have Zwift or need help finding the club please email me at rwpdavenger@gmail.com and I will walk you step by step through the process. Right now I plan on doing a PD Avenger’s ride every Thursday at 7:15 am Pacific or 3:15 pm GMT. Unfortunately, the club event software doesn’t allow you to “rubberband” yet but there is another way to do it so please email if you would like to participate in the PD Avengers ride on Thursdays.

I am a cyclist, definitely not a runner, but if there is a fellow zwifter runner who would like to volunteer to help people with Zwift and can sponsor a run on Zwift at least once a month I think that would be fun for runners. Please email me if interested.

The goal is to get as many members signed up on Zwift as possible in the next couple of months so we can hold some fun and massive events for Parkinson’s awareness month.  Let’s get out there and ride, run, walk, TOGETHER!

If you need assistance with getting setup with Strava or Zwift please email me, Rob Warner at rwpdavenger@gmail.com.  Use the email as well if you would like to participate in the Thursday rides.

PD AVENGERS MEMBER SPOTLIGHT

KRISTI LaMONICA

What advice would you give to someone who is newly diagnosed?

1. Slow down, take a deep breath, and stop trying to read everything on the internet.  Instead, go to the Davis Phinney Foundation (DPF) website and either download (everywhere) or order a print copy of The Every Victory Counts manual (US or Canada only). It is so easy to fall down the rabbit hole of information overload which could result in anxiety and fear. 

2.  Find a support system. PMD Alliance has weekly Zoom support groups and DPF also has Healthy Parkinson’s communities where you can find local resources in the US. For other countries, please reach out to your local PD charity.

What do you wish you were told when you were diagnosed?

At first I was going to say I wish I was told that hormones and menstrual cycles impact either the efficacy of medication, exacerbate symptoms, etc; but I’m not going to say that because asking questions led me to this amazing community. Instead, I wish I was told how every day with YOPD will be different—you never know what each day will bring.

When were you/loved one first diagnosed? 

Kristi with her two Border Collies.

My official diagnosis was in 2020, but the path to get there was far from linear.

Can you tell the story of your path to diagnosis?

My path to diagnosis was similar to a lot of other folks with Young Onset PD (YOPD). Like so many others, my story involves a limb, an ortho, and an almost surgery. I first noticed something was wrong in 2017 when I started having issues typing - my pinkie and ring finger on my left hand had a mind of their own and were not working in concert with my other fingers. 

They were either slow, or twitchy, or would just push down a random key. It was an adventure typing on a projected screen in meetings. I figured it was carpal tunnel and just kept pushing through. I’m a biology professor at a small college in upstate NY in the US, and a student was showing a video as an introduction to his presentation and the subject had PD and a tremor. I looked down at my hand and it was doing the exact same thing. 

I looked at my hand and thought “wow, I think I have PD”. I started to acquire some new, interesting movements when working out. When I’d put a barbell on my back for squats, the fingers on my left hand would start moving. When I would go to grab a heavy barbell for front squats, I’d have a vagal syncope episode where I’d almost pass out. Then my left elbow and left hip started to hurt. I finally made some doctor's appointments. 

A hip MRI showed a number of issues that needed attention, so we followed that path which led to surgery and physical therapy. All the while, my elbow just continued to hurt. Healing from the surgery was difficult. My hip flexor was constantly tight and painful and my gait never recovered. Fast forward 6 months, my elbow still hurt and I figured I should take care of that, so back to the ortho I went. 

After some X-rays, an EMG, and several discussions about surgery, resulted in my ortho saying I think you have Parkinson’s. That diagnosis had been bouncing around my brain for a few years, but hearing it said out loud was a shock. Lots of tears of frustration later, I was able to convince the movement disorder specialist to see me in two months instead of the seven they originally told me. Once I was finally able to see the specialist in the office, I was diagnosed within an hour. 

Looking back, I had prodromal symptoms since 2005 where I’d act out my dreams. I was in graduate school and worked with stem cells and I’d take care of cells in my sleep. I was doing science in my sleep.  It seemed funny and harmless at the time. I also have shoes going back to 2013, the left one is worn out on the inside where the little toe rubbed from clenching and cramping. In 2015, I started clenching my left hand all the time. I had so many symptoms along the way, but never connected the dots.

Why did you want to become a PD Avenger?

Kristi squatting with friends in her basement gym.

I became a PD Avenger because I need to be involved, I need to help make a difference, and I need to tell my story. We all need to tell our stories if we want to see advancements in future therapies.

What do you see is your superpower as a PD Avenger?

My ability to keep everything ordered, organized, and on track and my ability to follow through are my superpowers. As a biology professor with some neuroscience background, I can easily read the literature and am able to translate the science and make it accessible to everyone.

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

I wish people knew how unpredictable it can be. One minute you can be on with your meds working, and the next minute you can be off. It can be frustrating and can result in picking and choosing events to attend or not attend. It’s not that I don’t want to go to everything, it’s that I physically can’t.

What do you like to do for fun?

I like to hike with my best friend, her family, and my dogs. Garden and cook when I’m feeling good. Workout in my basement gym. Spending time with my family, especially my mom.  Hanging out with my husband and watching old episodes of Top Gear and newer episodes of the Grand Tour.

Planning for Prevention of Parkinson’s

A Trial Design Forum - REGISTRATION EXTENDED

IN-PERSON REGISTRATION & HOTEL DEADLINE EXTENDED TO SEPTEMBER 7th!

Join us at the Liberty Hotel in Boston, MA or online from Sunday, October 2nd to Monday, October 3rd to explore and help shape designs for the first therapeutic trials to pursue Parkinson's disease prevention. View the agenda updated with new advocacy, regulatory, and industry perspectives.

The deadline to register to attend in person is now September 7, 2022. Virtual registration is open until October 2, 2022.

Questions? Email Katherine Callahan at kfcallahan@mgh.harvard.edu

PD AVENGERS MEMBER SPOTLIGHT

ROB WARNER

PD Avengers Member Spotlight - Getting to know us!

Each month we will be posting full blog posts about each member of the newly formed newsletter team! This month, we will be getting to know Rob Warner.

Picture of Rob Warner on his bike in front of an Air Force Jet

When were you/loved one first diagnosed?

My name is Rob Warner and I was diagnosed with Early Onset Parkinson’s Disease in 2007 when I was 33 years old. 

Can you tell the story of your path to diagnosis? 

My initial symptoms were dystonia in my left arm, no arm swing and slowness of movement, which occurred mostly in my hands.  I wasn’t  too worried about these symptoms because I had crashed my bike during a recent triathlon and thought I had just pinched a nerve. Initially, The doctor referred me to an ALS specialist (Lou Gherig’s Disease). This came as quite a shock because I had a wife and four kids at the time (ages seven, four, two, and four months old). I had to wait four months for this appointment and it was a very emotional and scary time for me since I knew there was a chance that I might never get to see my children grow up or have many more years with my wife. Fortunately during the appointment, the doctor confirmed that my symptoms were not related to ALS and referred me to a Movement Disorder Neurologist. I did not get my diagnosis with Parkinson’s Disease until a few months later, but at that appointment, I remember telling my wife as we left the office, "phew, it's just Parkinson's!” The misdiagnosis from the first doctor was bitter sweet. Even though it initially gave me so much stress, it also gave me the perspective that even though Parkinson’s is a crappy disease and will alter how I do things, at least I’ve seen my kids grow up and I’ll be with my family for a long time.

Once diagnosed, with the help of medication and exercise, my symptoms stabilized which allowed me to continue doing triathlons which I had grown to love, as well as work as a flight test engineer at Edwards AFB for 15 years until just this May I finally retired on disability.

Why did you want to become a PD Avenger?

I can’t remember how I came across the book “Ending Parkinson’s Disease” but after reading it I wanted to March on Washington! Non-violently of course but I didn’t know how to do it.  But when listening to Larry Gifford’s podcast, “When LIfe Gives You Parkinson’s” and hearing he had started the PD Avengers I knew I wanted to be a part of such an awesome organization whose main focus is to end Parkinson’s.

What do you see is your superpower as a PD Avenger?

I think my superpower is being an example of perseverance and helping others with the disease, their family members, and anyone else who is curious about the disease. I refuse to let it win. I beat the odds by continuing to work for 15 years. Also, continuing my passion for flying by getting my glider’s license when my medical was  taken as a private pilot.  My goal has been to lead as normal of a life as possible while learning can about the disease and then helping others either through my newsletter the “Pedaling Parkie” or online, support groups, or just talking one on one with anyone that will listen to me.  I have found that because I was diagnosed at such a young age that it is a great talking point to anyone who sees me shuffling, tripping, or freezing that I’m not drunk but that I have Parkinson’s.  I guess helping others understand PD is my way of fighting back against the disease.

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

I wish people could understand the 24/7 aspect of the disease. It never stops trying to take from you. It is relentless in how it messes with every aspect of your life, physically, mentally, emotionally, socially. That's why we need to educate those around us, family, friends, coworkers, and government leaders on just how difficult it is to live everyday with PD so we can fund research to continue fighting for a cure.

What do you like to do for fun? 

I love spending time with my family.  We like to go boating, travel, and exercise together.  My family is super supportive. They support me in my exercise and fundraising campaigns for PD. In 2018, I started a team called “Team Fight’s On!” to earn money for PD research.  “Fight’s On” is a reference to what fighter pilots say to initiate a dogfight.  Sometimes I feel like I am in a dogfight with this disease.  My immediate family, my two brothers, my  sister and  her husband have now completed two “Salt to Saint” rides as part of the “Team Fight’s On!”.  The ride is a 450 mile relay race from Salt Lake City to St George Utah.  We have earned over $15,000 for PD research for the Michael J Fox Foundation (MJFF).

What advice would you give to someone who is newly diagnosed?

My advice to anyone fighting PD is that I cannot stress how important it is to exercise everyday you possibly can!  It doesn't matter what it is, find something  you enjoy because you'll do it.  Boxing, cycling, dancing, Tai Chi, walking, jogging, yoga whatever it is just get up and move!  We can't give up, we can't let it win!

What do you wish you were told when you were diagnosed?

One piece of advice is, I wish I had been told to look for trials that I could’ve been a part of much earlier in the course of the disease. I started on Sinemet as soon as I was told it was Parkinson’s.  If I had known that would disqualify me from so many trials I would’ve delayed the use of it while my symptoms were still very manageable.  I have been able to take part in many minor trials, but none with drug therapies.  I found that by the time I was looking to be a part of many drug trials it was too late.  So my advice to the Parkie Newbie is go to MJFF.org and sign up for the PPMI study. You can have your family sign up for it as well. You can also use the MJFF.org website to search for available trials in your area. The earlier you get involved in studies the better it is for all of us.

Is there anything else you would like to share with our community?

I had DBS surgery in Nov 2015 and it was a game changer. After the DBS surgery, I was down to 7 pills versus the 20 pills a day I took before the operation. Now I take 12 pills everyday, but these are not any of the pills that cause memory loss or compulsive behaviors I had taken previously. Best of all, it halted the dystonia issues I had in my leg and arm.  For some reason the operation has made it more difficult to coordinate my arms and legs for swimming, which is one of the parts of the triathlon which I loved doing for many years. Just like everything else that comes with PD, when it zigs, I zag and now I exclusively ride my bike. I love the bike!  A strange thing happens on the bike for me. I can be stumbling around hitting shoulders against walls, freezing, shuffling, and all the other fun that comes with the advancing disease, but when I get on a bike and start riding I feel almost normal.  It is a great escape for me and if I don’t do it daily I usually pay for it. My medicine is not as effective, I have major sleep issues and I will have extended off time.

Do you have any PD hacks to share?

My way of getting out of a freezing event is by using a cheap $8.00 laser pointer. If I shine it where I want to take my next step it helps me get unfrozen. It also helps my shuffling gait by helping me focus on longer strides.

The Bill To End Parkinson’s

“The most comprehensive, boldest, widespread piece of legislation specific to Parkinson’s disease ever introduced in the history of the U.S. congress.” — Ted Thompson, SVP Public Policy, The Michael J. Fox Foundation

A national plan to end Parkinson’s has the potential to:

• Dramatically increase federal research funding;

• Develop more effective pathways for treatments and cures;

• Improve early diagnosis;

• Spark new and improved models for patient care;

• Create standards and measures to prevent Parkinson’s disease;

• Address health disparities in diagnosis, treatment and clinical trial participation; and

• Enhance public awareness of the disease.

The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.

The National Plan to End Parkinson’s Act (H.R.8585) will, for the first time, unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.

This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The PD Avengers (Global Alliance to End Parkinson’s Diseas), The Michael J. Fox Foundation, members of UPAC (United Parkinson’s Advocacy Coalition) and Parkinson’s community are thankful for their leadership.

What’s Next?

The bill needs to pass the U.S. House and U.S. Senate and then signed by the President of the United States. Click video below to learn how a Bill becomes a Law.

PD Avengers Assemble - July 2022

PD Avengers, if you missed July’s PD Avengers ASSEMBLE meeting, here’s the video.

The Parkinson’s Games!

by Dianne Bramble, PD Avenger

Have you ever wanted to be an Olympic athlete?

I think we can all say that at some point in our lives, while watching the Olympics, we dreamed of standing on the podium watching our flag rise and hearing our National Anthem play. Most of us will never have that chance and when we were diagnosed with Parkinson’s that pretty much sealed the deal.

Or did it?

Some amazing people in Europe (People with Parkinson’s) have started a wonderful event called The Parkinson Games. Anyone with Parkinson’s can enter.

WHEN: Thursday, August 4, 2022 to Saturday, August 6, 2022

WHERE: Eindhoven, The Netherlands

WHIC SPORTS: More than 20! They’re listed here. The sports have been specially chosen for people with Parkinson's.
It concerns sports such as athletics (100m, 800m, 5km, long jump and shot put), badminton, basketball (3x3), boxing, curling, darts, duathlon, golf, bocce, powerlifting, spinning, squash, table tennis, tennis, football and swimming. In basketball we also have penalty throws in addition to the game. Playing football also has two options. A real match or taking penalty kicks. Golf is a competition over 9 or 18 holes. In addition, clinics are given for everyone. The duathlon is a swim run (250m swim and 5km run)

REGSITER You can follow this link to read more about it and sign up.

In Canada, I (PD Avenger Dianne Bramble) am keeping track of the Canadian Team Participations. In order have a coordinated Canadian Team presence.

The PD Avengers will also be be tracking other PD Avengers headed to the games. After you officially sign, be sure to swing back here to answer a few questions for us.

Who’s ready to join the team and live a dream? I know I am.

Please fill out the form below.

Sit2Stand Challenge

Stand Up to Parkinson’s

The PD Avengers are challenging YOU to see how many sit2stands you can do in a minute on World Parkinson’s Day with our partners; Neuro Heroes, Parkinson’s Africa, U-Turn Parkinsons and Rock Steady Boxing.

Hello, PD Avengers, we are the new co-chairs of the wellness committee - Kristi and Tash.

For our first order of business, we would like to challenge you to see how many sit2stands you can do in a minute for World Parkinson’s day on April 11, 2022. And then, we ask that you nominate  all your friends and family for this challenge! Film your sit2stands and share to social media with #worldparkinsonsday. Keep up the sit2stands throughout the day and log them all. Let’s support our friends at Neuro Heroes, who created this challenge, in meeting and exceeding their goals.

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1. Film your sit2stands and post them to social media using #worldparkinsonsday.

2. Nominate at least 3 of your friends to compete in the challenge.

3. Keep doing sit2stands throughout the day, then record and log your final numbers.

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Register at a link below and be sure to track the number of Sit2Stands you complete.

Click here for Africa Sit2Stands!

Click here for Canada Sit2Stands!

Click here for United States Sit2Stands!

Click here for United Kingdom and everywhere else Sit2Stands!

Why sit2stands?

The sit2stand challenge helps raise awareness by challenging individuals to move. Movement is something that becomes difficult with PD and is also the one thing demonstrated to slow the progression.

The awesome thing about a sit2stand is that it is a functional movement that is scalable if you find it challenging. Our Neuro Heroes friends with help from U-Turn Parkinson’s, Rock Steady Boxing, and us here at PD Avengers made a video that shows you how to do sit2stands along with modifications.

Let’s get sit2stand-ing and have some fun!

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What are our goals?

As many Sit2Stands as People with Parkinson’s in your country.

(Numbers are rounded up from the 2020 estimates charted below)

2.7 Million for China

1 million for the US

344,000 Japan

266,000 Germany

230,000 Brazil

150,000 Italy

160,000 France

145,000 United Kingdom

120,000 Mexico, Spain

115,000 Canada

South Korea 75,000

Taiwan 60K

Unfortunately we do not have great statistics for all countries.

Kristi LaMonica

Co-Leader, Wellness Committee

Nastash (Tash) Fathergill Misbah

Co-Leader, Wellness Committee

How to properly and safely do a sit2stand.

N. Maserejian, L. Vinikoor-Imler, A. Dilley. Estimation of the 2020 Global Population of Parkinson’s Disease (PD) [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/estimation-of-the-2020-global-population-of-parkinsons-disease-pd/. Accessed April 3, 2022

Open Letter to Director-General of World Health Organisation (WHO)

Global Alliance to End Parkinson’s Disease
PD Avengers
Larry Gifford, President
 

April 1, 2022

Dr. Tedros Adhanom Ghebreyesus
Director-General
World Health Organization
New York, NY, 10017
United States 

Dear Dr. Tedros Adhanom Ghebreyesus,

I have the honor to send this letter on behalf of the Global Alliance to End Parkinson’s Disease– an international alliance of people living with Parkinson’s disease (PwP), our 90+ Parkinson’s organization partners and thousands of members from more than 80 countries, standing together to demand change in how the disease is seen and treated.1  

 I am writing to you as we approach the 25th anniversary of World Parkinson’s Day. In 1997, the World Health Organization (WHO) and the European Parkinson Disease Association (EPDA) collectively announced 11 April, James Parkinson’s 1755 birth date, as the annual day to bring urgently needed focused attention to this disease, which afflicts people without prejudice in every continent, regardless of ethnicity, race, colour, class, age, gender, and culture.1

This year, our alliance is launching the website www.worldparkinsonsday.com and a unifying Parkinson’s logo, “The Spark,” to be used by individuals and organizations worldwide to help spark conversation, education, and urgency towards finding  ways to stop Parkinson’s in its tracks. The World Parkinson’s Day logo with the Spark is available in 43 languages.

The World Health Organization (WHO) reports, “The global burden of neurological and neurodevelopmental conditions is high, with approximately 70% of the burden in low- and middle-income countries. Neurological conditions are the leading cause of disability adjusted life years (DALYs) and the second leading cause of death globally, accounting for nine million deaths per year.”2

WHO also declares Parkinson’s disease is the world’s fastest growing neurological condition.3

There is no cure. 

Globally, more than ten million people have the condition.4 Many more live with it, but without diagnosis due to the lack of access to a medical professional.

Parkinson’s is a misunderstood disease and lack of awareness makes people with Parkinson’s vulnerable and discriminated against. People with Parkinson’s (PwPs) earn less money, have difficulty obtaining and retaining employment despite qualifications and ability, and often must stop work as the disease progresses. The symptoms of this disease are pervasive, and  PwP’s are often stigmatized; mistaken for being intoxicated and in some countries even considered to be cursed by witches. PwP’s often lose their voice,  their ability to control their bodies and in essence, their future. This disease produces whole body disability and impacts PwPs physically, mentally, and emotionally.

Additionally, the mainstream drug to help manage Parkinson’s is Levodopa. This drug was discovered before the crew of Apollo 11 reached the moon. Yet, there are thousands of people with Parkinson’s living in poverty across the world, sometimes making the brutal choice between food for their family and medication for themselves. With a prescription of levodopa, people with Parkinson’s can continue for a time to work, be a partner, a parent and contribute to society. However, with time, the window of effectiveness for levodopa decreases and those taking the medication can experience complicated side effects.

World Parkinson’s Day is on 11 April. 

Today the United Nations and the WHO do not recognise it on their websites, calendars, official media releases, or social media channels.

We are humbly and respectfully requesting your support and formal recognition of World Parkinson’s Day on 11 April. We have included a media release and additional documents which may aid your participation through social media. Hopefully, we can spark a conversation to have World Parkinson’s Day formally recognised by the United Nations and the World Health Organization.

We also encourage you to join our Global Alliance of Partners and encourage individuals at your organization to join us as we work to add urgency to the cause of ending Parkinson’s.

Larry

(Signed) Larry Gifford
PD Avengers ,President

1 PD Avengers website www.pdavengers.com
2 History of World Parkinson’s Day – Parkinson’s Life website 2015 https://parkinsonslife.eu/dr-parkinsons-birthday-a-date-to-remember/
3 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2
4 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2
5 Parkinson Foundation Statistics https://www.parkinson.org/Understanding-Parkinsons/Statistics

Signed on behalf of the following organizations who have joined the alliance and are support The Spark campaign.

 1.      Alianza Iberoamericana de Parkinson (Spanish Speaking Countries)

2.      APDA (USA) American Parkinson's Disease Association (United States)

3.      APDA Massachusetts (United States)

4.      APDA Northwest (Pacific Northwest of United States)

5.      Asociația "Mai puternici decât boala Parkinson" (Romania)

6.     Associazione Italiana Giovani Parkinsoniani (Italy)

7.      BC Brain Wellness Program (Canada)

8.     Brian Grant Foundation (United States)

9.      Canadian Open Parkinson Network (Canada)

10.   Charco Neurotech (UK)

11.    Comitato Italiano Parkinson (Italy)

12.    Con P de Parkinson (Spain)

13.   Cure Parkinson's (UK)

14.   Davis Phinney Foundation (United States)

15.   Empower Parkinson's  (Canada)

16.   Ending Parkinson's Disease Book  (United States & Netherlands)

17.    Entraidons-nous (French-Canadian/Quebec, Canada)

18.   EPDA | European Parkinson's Disease Association  (Europe)

19.   Fuerte Es La Vida, Parkinson No Limits (SPAIN)

20.   Hilde-Ulrichs Foundation

21.    IMPACT Parkinson's (British Columbia)

22.   IPDGC - international Parkinson Disease Genomics Consortium – (Africa)

23.   It's Not Funny (Australia)

24.   LARGE-PD Latin American Research Consortium of Parkinson's Disease

25.   LSVT Global - (United States)

26.   Mediflix (United States)

27.   Move4YPD (Netherlands)

28.   Neuro Heroes (United Kingdom)

29.   Pacific Parkinson's Research Centre (British Columbia)

30.   Pacific Parkinson's Research Institute (British Columbia)

31.   Parkinson Alliance (United States)

32.   Parkinson Association of Alberta (Canada)

33.   Parkinson Canada (Canada)

34.   Parkinson Net (Netherlands)

35.   Parkinson Place (United States)

36.   Parkinson Society British Columbia (Canada)

37.   Parkinson Society Nova Scotia (Canada)

38.   Parkinson Society Southwestern Ontario  (Canada)

39.   Parkinson TV (United States)

40.   Parkinson Wellness Project - PWP  (United States)

41.   Parkinson Wellness Project - PWP  (Canada)

42.   Parkinsong (Austria)

43.   Parkinsonline (Austria)

44.   Parkinson's Africa (Africa)

45.   Parkinson's Alliance (United States)

46.   Parkinson's Art (UK)

47.   Parkinson's Association of West Michigan (United States)

48.   Parkinson's Australia (Australia)

49.   Parkinson's Disease Patients Welfare Society (Kolkata, India)

50.   Parkinson's Foundation (United States)

51.   Parkinson's International Foundation (United States)

52.   Parkinson's Resources (Pacific Northwest of United States)

53.   Parkinson's Si Buko Uganda (Uganda)

54.   Parkinson's UK (UK)

55.   Parkinson's Unity Walk (United States)

56.   Parky Life (UK)

57.   Schluss Mit Parkinson PD Avengers (Germany)

58.   PD Avengers Scotland (UK)

59.   PD Avengers Puerto Rico (Unincorporated Territory of the United States)

60.   PD Buzz (United States)

61.   PD Warrior (Australia)

62.   Ping Pong Parkinson (United States)

63.   PMD Alliance | Parkinson & Movement Disorder Alliance (United States)

64.   Power Over Parkinson's (United States)

65.   Rosy Gallery (Tokyo, Japan)

66.   Shake it Up - (Australia)

67.   Shaky Nation (United States)

68.   Shaky Radio (UK)

69.   Sport Parkinson's (UK)

70.   Spotlight YOPD (UK)

71.    Stop, Parkinson România ! (Romania)

72.   STOPD - (NY & LA) - Theatre for PD (United States)

73.   Surrey Neuroplasticity Clinic (Canada)

74.   The Michael J. Fox Foundation (United States)

75.   The Parkinson Games (Netherlands)

76.   Tightrope Impro Theatre – Improv for Parkinson’s (Canada)

77.    Trepetlika Parkinson's Disease Society of Slovenia (Slovenia)

78.   Twitchy Woman (United States)

79.   University of Dundee (UK)

80.   Unshakeable MD (Canada)

81.   U-Turn Parkinsons (Canada)

82.   Voice Aerobics, LLC (United States)

83.   When Life Gives You Parkinson's (Canada)

84.   Wikiparky.tv (Italy)

85.   Women's Parkinson Project (Ireland & United States)

86.   World Parkinson's Congress (Spain)

87.   World Parkinson's Coalition (United States)

88.   World Parkinson's Program (Canada)

89.   Yes! And Exercise (United States)

90.  Yuvedo Foundation (Germany)

GLOBAL ALLIANCE TO END PARKINSON’S DISEASE LAUNCHES NEW SYMBOL FOR PARKINSON’S AWARENESS

Vancouver, BC Canada – April 1, 2022 – More than 80 Parkinson’s disease organizations and thousands of advocates from 83 countries announce the launch of ‘The Spark,’ a new international symbol for Parkinson’s awareness, to increase conversation and public awareness around the world’s fastest growing neurological disease. The symbol will be promoted and shared around the world during World Parkinson’s Day on Monday, April 11, 2022.

The Spark, inspired by dopamine – a critical electro-chemical neurotransmitter that people with the disease are striving to retain – will be used to energize a global movement and inspire urgency, unity, and hope to end Parkinson’s Disease. 

“The who’s who of Parkinson’s combine forces under a new symbol to keep the disease top of mind for everyone. The Spark is intended to electrify a powerful movement changing how all of us think about this disease. We want to break the stigma around Parkinson’s. We’re leading a louder call to fund medical breakthroughs. And together – we’re striving to put Parkinson’s in the past,” said Larry Gifford, President and co-founder of Global Alliance to End Parkinson’s Disease (also known as the PD Avengers).

“We want to break the stigma around Parkinson’s. We’re leading a louder call to fund medical breakthroughs. And together – we’re striving to put Parkinson’s in the past”

— Larry Gifford, President of Global Alliance to End Parkinson’s Disease PD Avengers

THE INCREASING IMPACT OF PARKINSON’S ON INDIVIDUALS, FAMILIES, AND THE GLOBAL COMMUNITY CANNOT BE IGNORED.

●      Parkinson’s Disease is the fastest growing neurological condition in the world.

●      Parkinson’s is indiscriminate regarding gender, sex, ethnicity, age, and geography.

●      Up to 10% of People with Parkinson’s are diagnosed in their 40’s or younger.

●      Parkinson's is caused by a combination of genes, environmental and lifestyle influences. The interaction of all three components determines if someone will develop Parkinson's.

●      Currently, there is no cure.

●      The herbicide and pesticide Paraquat are among the toxins linked to increased risk of the onset of Parkinson’s disease. It is banned in dozens of countries including China and the UK, where they continue to manufacture the product. While a teaspoon is lethal for a human being, more 7-million pounds of Paraquat were used on crops in the United States in 2015 and that number is steadily increasing year after year.

●      Parkinson’s is a misunderstood disease, and the lack of awareness makes people with Parkinson’s vulnerable and discriminated against. People with Parkinson’s earn less money, have difficulty obtaining and retaining employment despite qualifications and ability. They often have to retire early. The symptoms of the disease, mean people with the disease are often mistaken for being intoxicated and in some countries are considered to be cursed by witches. Many live in constant pain. They often lose their voice, their confidence, the luxury of sleep and their ability to control their automatic functions, their limbs, and their future.

SHARE YOUR SPARK ON WORLD PARKINSON’S DAY

This World Parkinson’s Day, we are calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. People can join our movement by sharing The Spark with friends, family and on social media channels on Monday, April 11, 2022.

Every organization, individual or group who want is encouraged to share The Spark in their campaign, event, or communications around World Parkinson’s Day and beyond. The Spark toolkit can be downloaded here worldparkinsonsday.com. People can either personalize The Spark or share one of dozens of pre-made graphics.

ABOUT THE SPARK’S DEVELOPMENT

The Spark was conceived by a coalition of global patient and advocacy organizations who are all seeking to end Parkinson’s Disease.

 “The EPDA is incredibly proud to be a part of this incredibly unique global coalition of Parkinson’s organizations. We all have the same goal: for the ’Spark’ logo to, over time, help the Parkinson’s community speak with one voice on World Parkinson's Day – thereby amplifying our own individual voices, and creating a bigger impact globally year after year. People with Parkinson’s and their families cannot wait for change to happen to them. We need to create that change ourselves, and we hope this logo will be an important step in that direction,” said Dominic Graham, Operations Director, European Parkinson’s Disease Association (EPDA).

“We know the power of the Parkinson’s community cannot be understated. It’s the spark of the community coming together in a multitude of ways, including through this global alliance of Parkinson’s organizations, which has transformed Parkinson’s research into what it is today. And it’s this community coming together that will help realize new breakthroughs that are right around the corner for people and families with Parkinson’s,” said Debi Brooks, CEO and Co-Founder of The Michael J. Fox Foundation for Parkinson’s Research.

“Parkinson’s is the fastest growing neurological condition in the world, and it needs to be recognised as an urgent health priority. I hope that this year’s World Parkinson’s Day will be the spark that creates a sense of urgency within international health agencies, governments, and leads to significant investment in to research for treatments that change the progression of Parkinson’s.  It is time to end Parkinson’s,” said Helen Matthews, Deputy CEO, Cure Parkinson’s

The Spark was designed in partnership with Franklyn (franklyn.co), a creative studio based in Brooklyn, New York. The six-month effort was comprehensive and engaged a global community of PD patients and advocates.

“This was a tall task as whatever symbol we crafted for the global PD community had to be simple, urgent, and tied to the disease itself. Creating a logomark that is also customizable and truly ‘open-source’ – anyone can download it, draw it, draw on it and use it to tell their own stories – is also what makes it powerful, personal, and deeply emotional,” said Michael Freimuth, the Co-Founder of Franklyn.

To share The Spark and join the movement to end Parkinson’s, visit worldparkinsonsday.com

We encourage all media to use The Spark and the digital assets found here, to help debut the symbol to audiences worldwide beginning April 1st, on World Parkinson’s Day and as a symbol of Parkinson’s Awareness when appropriate throughout the year.

A full list of members and links to the organizations are listed below and will be featured on the website: worldparkinsonsday.com.

Additional quotes below

 ###

Media Contact:

Bruce Claggett

bruce@switchboardpr.com

(604) 996-2256

PARTNER ORGANIZATIONS

Organizations which are supporting The Spark include (in alphabetical order):

1.      Alianza Iberoamericana de Parkinson (Spanish Speaking Countries)

2.     APDA American Parkinson's Disease Association (United States)

3.     APDA Massachusetts (United States)

4.     APDA Northwest (Pacific Northwest of United States)

5.     Asociația "Mai puternici decât boala Parkinson" (Romania)

6.     Associazione Italiana Giovani Parkinsoniani (Italy)

7.      BC Brain Wellness Program (Canada)

8.     Brian Grant Foundation (United States)

9.     Canadian Open Parkinson Network (Canada)

10.   Charco Neurotech (United Kingdom)

11.   Comitato Italiano Parkinson (Italy)

12.   Con P de Parkinson (Spain)

13.   Cure Parkinson's (United Kingdom)

14.   Davis Phinney Foundation (United States)

15.   Empower Parkinson's  (Canada)

16.   Ending Parkinson's Disease Book  (United States & Netherlands)

17.   Entraidons-nous (French-Canadian/Quebec, Canada)

18.   EPDA | European Parkinson's Disease Association  (Europe)

19.   European Parkinson’s Therapy Centre (Italy)

20.  Fuerte Es La Vida, Parkinson No Limits (Spain)

21.   Hilde-Ulrichs Foundation (Germany)

22.   IMPACT Parkinson's (British Columbia)

23.   IPDGC - international Parkinson Disease Genomics Consortium – (Africa)

24.  It's Not Funny (Australia)

25.   LARGE-PD Latin American Research Consortium of Parkinson's Disease (Latin America)

26.  Living Better with Parkinson’s (Canada)

27.   LSVT Global (United States)

28.  Mediflix (United States)

29.  Move4YPD (Netherlands)

30.  Neuro Heroes (United Kingdom)

31.   Pacific Parkinson's Research Centre (British Columbia)

32.   Pacific Parkinson's Research Institute (British Columbia)

33.   Parkinson Alliance (United States)

34.  Parkinson Association of Alberta (Canada)

35.   Parkinson Canada (Canada)

36.  Parkinson Place (United States)

37.   Parkinson Society British Columbia (Canada)

38.  Parkinson Society Nova Scotia (Canada)

39.  Parkinson Society Southwestern Ontario  (Canada)

40.  Parkinson Wellness Project - PWP  (United States)

41.   Parkinson Wellness Project - PWP  (Canada)

42.  Parkinsong (Austria)

43.  Parkinsonline (Austria)

44.  Parkinson's Africa (Africa)

45.  Parkinson's Alliance (United States)

46.  Parkinson's Art (United Kingdom)

47.   Parkinson's Association of West Michigan (United States)

48.  Parkinson's Australia (Australia)

49.  Parkinson's Disease Patients Welfare Society (Kolkata, India)

50.  Parkinson's Foundation (United States)

51.   Parkinson's International Foundation (United States)

52.   Parkinson's Resources (Pacific Northwest of United States)

53.   Parkinson's Si Buko Uganda (Uganda)

54.  Parkinson's UK (United Kingdom)

55.   Parkinson's Unity Walk (United States)

56.  Parky Life (United Kingdom)

57.   PD Avengers Scotland (United Kingdom)

58.  PD Avengers Puerto Rico (Unincorporated Territory of the United States)

59.  PD Buzz (United States)

60.  PD Warrior (Australia)

61.   Ping Pong Parkinson (United States)

62.  PMD Alliance | Parkinson & Movement Disorder Alliance (United States)

63.  Power Over Parkinson's (United States)

64.  Rosy Gallery (Tokyo, Japan)

65.  Schluss Mit Parkinson PD Avengers (Germany)

66.  Shake it Up (Australia)

67.   Shaky Nation (United States)

68.  Shaky Radio (United Kingdom)

69.  Sport Parkinson's (United Kingdom)

70.   Spotlight YOPD (United Kingdom)

71.   Stop, Parkinson România ! (Romania)

72.   STOPD - (NY & LA) - Theatre for PD (United States)

73.   Surrey Neuroplasticity Clinic (Canada)

74.   The Michael J. Fox Foundation (United States)

75.   The Parkinson Games (Netherlands)

76.   Tightrope Impro Theatre – Improv for Parkinson’s (Canada)

77.   Trepetlika Parkinson's Disease Society of Slovenia (Slovenia)

78.   Twitchy Woman (United States)

79.   University of Dundee (United Kingdom)

80.  Unshakeable MD (Canada)

81.   U-Turn Parkinsons (Canada)

82.  Voice Aerobics, LLC (United States)

83.  When Life Gives You Parkinson's (Canada)

84.  Wikiparky.tv (Italy)

85.  Women's Parkinson Project (Ireland & United States)

86.  World Parkinson's Congress (Spain)

87.   World Parkinson's Coalition (United States)

88.  World Parkinson's Program (Canada)

89.  Yes! And Exercise (United States)

90.  Yuvedo Foundation (Germany)

QUOTES FROM MORE ORGANIZATIONAL LEADERS SUPPORTING THE NEW SYMBOL FOR PARKINSON’S DISEASE AWARENESS

“The Davis Phinney Foundation is proud to participate in this global partnership to increase awareness of Parkinson’s. Awareness, health literacy, and community support are just as critical to our mission of helping people with Parkinson’s live well today as they are to ultimately ending Parkinson’s, and we stand in solidarity with the call to increase advocacy, reduce stigma, and change the way people live with Parkinson’s.”

- Polly Dawkins, Executive Director, Davis Phinney Foundation

“Parkinson Association of Alberta is a proud member of a united international community of people living with or loving someone with Parkinson disease. On World Parkinson's Day 2022, we join together to spark conversation and understanding of the condition and those affected.”

- Lana Tordoff, Executive Director, Parkinson Association of Alberta

“‘Don't tell anyone I have Parkinson's!'. Over and over again I hear these words. Stigma stops people going out, exercising, getting treatment and socialising which leads to inactivity and depression. It seals their fast decline. I will not hide! I exercise and get back what I lost. I will not except stigma! I am worthy of love just as much as anyone.”

- Christine Jayachandran, Founder, Alianza Iberoamericana de Parkinson

“We are excited to follow the fear, failure, and fun as a group, sparking new connections and resources for all to connect and live better together!”

- Robert Cochrane, CEO/Founder, Yes, And…eXercise!

"It is only through global collaboration that we will find the answers to prevent, slow and stop Parkinson's in it tracks. Let's unite and light up the Spark to put an end to Parkinson's."

- Clyde Campbell AM, Founder & CEO of Shake It Up Australia Foundation

“LSVT Global, Inc. is committed to efficacious rehabilitation for PD globally.”

- Cynthia Fox, PhD, CEO, LSVT Global

"We at Shaky Nation are delighted to be a small part of World Parkinson's Disease Day 2022 and the unveiling of the Spark! If you haven't yet found a tribe of likeminded people with Parkinson's Disease, come check us out. Let's make some Sparks!"

- Steve Phillips, founder of Shaky Nation

“Spark is a brilliant idea. I hope it will spark a sleeping community around the globe into a wildfire of activity that will lead us into slowing down the progression and finding a cure as soon as humanly possible. We didn't conquer Parkinson, but we are conquering the fear of Parkinson. Tulip never impressed me. SPARK does it for me!”

- Nenad Bach, founder & president PingPongParkinson®

One Giant Leap for Geoff, One Small Step for Parkinson’s…

Sir Geoffy of Moomba takes flight. Official photo: Moomba Committee and used on their social media posts.

The iconic Melbourne Moomba festival is run over 3 days and is the largest free Festival in the Southern Hemisphere . The major event for the festival is the iconic Birdman Rally.

Birdman Rally participants must create a flying air craft. The craft has be hand built with a lot of size, weight and material limitations.

On the top of Geoff Constable’s shaky aircraft was a hand built replica of the Flux Capacitor from the Back to the Future movie franchise starring Michael J. Fox. That shouldn’t be a surprise to anyone who knows this Naval Architect turned Parkinson’s Advocate.

15 years into his journey with Parkinson’s, Sir Geoffy of Moomba was raising awareness of the disease. His entry and his team featured the PD Avengers and Fight Parkinson’s Victoria.

Awareness Mission Accomplished thanks to The Age and countless videos on YouTube.

And now, let the Birdman Rally countdown begin; 3-2-1…

When it was show time, Geoff, 65, didn’t disappoint. Donning a new BLUE hairdo and a custom fit, skin tight PD Avengers superhero costume, this Aussie came to compete. His flight was a raucous 4.5 meters.

The PD Avengers flew into a 2nd place finish in our first time in the event.

PD Avenger’s Aussie chapter leader Geoff Constable and his TEAM PD AVENGERS raised $15,000 in 2 weeks plus $5,000 prize money which will go to Fight Parkinson’s in Victoria, Australia.