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)
