More Than Support: A Sibling's Transformation at the #WPC2023
Dave Warner's journey to WPC2023 with his brother, Rob, transcended mere support; it became an experience of growth and connection. From the raw honesty of speakers like Connie Phinney to an unwavering sense of urgency and determination in the community, Dave found himself deeply moved and inspired. Read about his personal transformation, his insights on research and caregiving, and how the experience blessed him more than he ever anticipated.
Dave and Rob Warner in Barcelona
My name is Dave Warner, I don’t have Parkinson’s disease. I accompanied my brother Rob, to Barcelona, who has Early-Onset Parkinson’s Disease. I was there for three reasons. First, to provide assistance to my brother, if he needed it – he didn’t need it much at all. Second, to learn what I can about the research, treatments, and care strategies that appear to be helpful. Lastly, I just love spending time with my brother. We have been close all our lives and I always love being with him.
I was so impressed with the strength of character, humor and genuine kindness of the many people I met there. I was pleasantly surprised with the level of candor I observed. There seems to be a general open agreement that having Parkinson’s just plain sucks! But with that, I observed a general determined optimism to live life as best as possible anyway. There is little, if any, desire to receive pity; but there is a growing sense of urgency, bordering on impatience, to meaningfully address this disease on the national and world level.
I appreciated the urgency that I sensed among the researchers and physicians regarding efforts to address causes, improve treatments, and find cures. I was also concerned when I see the community appear to latch on to singular answers. It is important that we not let our hunger for a solution eliminate our responsibility to rigorously assess alternate paths of progress.
My favorite speaker was Connie Phinney. Her raw honesty about the challenges of caregiving (and strategies to address them) touched my heart; and clarified for me how I can help my brother and sister-in-law.
Most importantly, to me, and I don’t know exactly why or how, the overall experience changed me personally. It made me more informed, with a desire to be more engaged. I cried at the conclusion of the closing ceremonies. Attending WPC2023 was not just something I did to support my brother. The experience blessed me personally far more than I expected or even hoped.
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.”
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.
VIDEO: Is Trichlorethylene an
Invisible Cause of Parkinson’s?
Professor Ray Dorsey, MD
and Larry Gifford, PD Avengers
GLOBAL ALLIANCE TO END PARKINSON’S DISEASE LAUNCHES NEW SYMBOL FOR PARKINSON’S AWARENESS
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.
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”
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
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Media Contact:
Bruce Claggett
(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®
