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®
PD Avengers Championing ‘Women and PD’
The International Women’s Day 2021 theme this year was about #ChooseToChallenge . With the sentiment “from challenge comes change”, one of the PD Avengers founding members, Richelle Flanagan, chose to challenge and call out gender bias inequality for women with PD. She did this through an interview with one of the co-founders of the Women’s Brain Project, Dr Maria Teresa Ferretti, which is an organisation championing women’s brain health. As part of the webinar, Richelle set up a PD Avengers survey of women with PD and the effect of hormones on their symptoms. The results of the of the initial 20 respondents were so interesting that the PD Avengers Wellness Committee decided to disseminate the survey more widely to see if the results were correct. To date the survey has almost 200 responses, including a Hispanic survey.
The survey results identify an unmet need for better treatment of women Parkinson’s symptoms in relation to hormonal changes.
The results showed that 74% of women experience worsening of their symptoms around menstruation with rigidity, bradykinesia and dystonia being the worst affected motor symptoms (Figure 1). Whilst fatigue, anxiety and depression being the worst affected non- motor symptoms (figure 2).
Figure 1 PD Motor symptoms affected by menstruation.
Figure 2 PD Non-Motor symptoms affected by menstruation.
Interestingly, the Hispanic survey showed that the most affected non-motor symptoms were fatigue, pain, apathy, and anxiety.
86% of respondents reported that their symptoms got worse in the week prior to their menstrual bleed. This is linked to a drop in oestrogen levels in the week prior to menstruation. The drop in oestrogen affects the production of dopamine which can lead to worsening of PD symptoms.
65% of women who are perimenopausal reported that their symptoms fluctuate randomly and are more difficult to control. While 61% of women who have gone through the menopause report that their symptoms remained the same, 17% reported improvement in symptoms and 22% said they were worse.
21% of the non-Hispanic respondents reported having received HRT, whilst only 5% of Hispanic respondents reported having received HRT. Of the respondents who reported taking HRT, 46% reported an improvement in their PD symptoms whilst 27% reported worsening of symptoms and similarly 27% reported no change in symptoms. Of the women who reported receiving HRT, 78% said they received it during perimenopause.
Finally, 87% of women said that their neurologist had never discussed the effect of hormones on their PD symptoms; 96% said their neurologist never adjusted PD medication around their cycles; 95% said their neurologist never suggested HRT and 90% never discussed the effects of perimenopause or menopause on their PD (Figure 3).
Figure 3 Neurologists engagement around hormones effect on PD
This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.
This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss the survey results with a panel of experts and to discuss what needs to be done for women with PD.
These survey results corroborated many of the discussions by women with PD in various support groups both online and off-line about the effect of hormones on their PD. This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.
The first webinar, hosted by the Cure Parkinson’s Trust, included the following panellists:
Professor Elena Moro, MD, PhD, Professor of Neurology at the faculty of medicine of the Grenoble Alpes University in Grenoble, France, and Co-chair of EAN Task Force on Gender and Diversity issues in Neurology.
Dr Maria Teresa Ferretti, PhD, Co-founder and Chief Scientific Officer, Women's Brain Project, Switzerland
Louise Ebenezer, Parkinson’s disease Clinical Nurse Specialist, ABM University Health Board, Bridgend, UK
Dr Cathy Molohan, PD Advocate, WPC Ambassador, PD Avenger, Director International Relations of Yuvedo, Germany
Dr Annelien Oosterbaan, MD/PhD, PD Advocate, Gynaecologist, The Erasmus University Medical Center, Rotterdam, Netherlands
Richelle Flanagan, Dietitian, PD Advocate, WPC Ambassador, PD Avengers Founding Member, Co-founder Women’s Parkinson’s Project, Ireland.
The webinar can be watched back here: https://cureparkinsons.org.uk/2021/04/pdavengers-webinar/
The second webinar was hosted by our partner the PMD Alliance with the following panellists:
The second webinar was hosted by our partner the PMD Alliance with the following panellists:
Dr Roberta Marongiu, Assistant Professor of Neuroscience in Neurological Surgery, Weill Cornell Brain & Spine Unit.
Dr Maria De León, Retired Movement disorder specialist, PD Advocate, and well-known author of Parkinson’s Diva.
Dr Indu Subramanian, MDS Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and UCLA Hospital.
Kat Hill. RN, MSN, NP, PD Advocate for WPC, Davis Phinney Foundation, PD Avengers, and co-founder of the Women’s Parkinson’s Project
Richelle Flanagan, RDN, MSc, PD Advocate, WPC Ambassador, PD Avengers Founding Member, and co-founder of the Women’s Parkinson’s Project.
The webinar can be watched back here: https://www.pmdalliance.org/portfolio/women-with-pd-addressing-needs-pursuing-breakthrough-treatments/
There were many items discussed by these panels with the following main themes:
The fact that some centres are using extra PD medication to reduce the impact of the drop in oestrogen around menstruation, whilst other centres are using hormone therapy such as the contraceptive pill. Albeit that both approaches seem to work for some women with PD, these approaches are not widely used and there is no consensus on the best approach.
The lack of awareness of neurologists of the impact of hormones on PD symptoms around menstruation, perimenopause, and post menopause.
The lack of clinical guidelines for the management of hormonal issues in PD.
The lack of clinical trials looking at hormonal issues in women with PD.
The use of diaries, in particular digital monitoring of hormonal fluctuations in relation to PD symptoms and the potential for digital biomarkers to help identify differences between the genders but also potentially differentiating prodromal symptoms between genders.
The need for women to speak up for themselves and to discuss the impact they believe hormones are having on their symptoms.
The lack of funding for research into women with PD and the need to collaborate across other neurological conditions that are similarly impacted by hormones e.g., MS, migraine.
Several action items were identified out of these webinars which the PD Avengers wish to take forward:
1. Development of expert opinion guidelines for the management of women’s PD symptoms around menstruation.
2. Need for all education of neurologists around hormonal impacts on PD symptoms.
3. Need for clinical trials to give more robust evidence for the better use of PD medication and hormonal medication for the management of PD symptoms in women.
4. Development of a research paper based upon the PD Avengers survey results and the webinar discussions.
5. Collaboration across different centres on the development of research surveys of women with PD.
6. Development of advocacy information about women, PD, and hormones for women to discuss with their medical providers.
7. Call to action women with PD to work together to raise awareness of the unmet medical needs of women living with PD.
8. Call to action by the PD Avengers to raise awareness of the need for increased funding into research for women and PD.
9. The need for a ‘Women with PD’ taskforce to call for action to improve the lives of women living with PD.
The surveys are still available if women with PD would like to complete them:
Non - Hispanic https://www.surveymonkey.com/r/PDWomenHormones
Hispanic https://www.surveymonkey.com/r/mujeryparkinsons
Please sign up for the PD Avengers https://www.pdavengers.com/become-a-pd-avenger to be kept up to date with our actions for Women with PD including sharing research surveys, research results, further webinars, and any other information relevant to women with PD.
Texas Governor Issues Proclamation for Parkinson’s Awareness Month
PD Avenger Marcie Salamone, Dallas Area Parkinson Society and a Director on the Board of the Parkinson Foundation is going straight to the top in Texas to get some help in raising awareness. She tells us all about a personal appeal to Governor Greg Abbot of Texas. She says she requested the Governor issue a proclamation to recognize April as Parkinson's Awareness Month. And it arrived just in time for April events for Parkinson Awareness. Marcie’s action was the catalyst for a Governor of the U.S. to issue proclamation. That raises awareness. Thanks Marcie.
