Parkinson’s Awareness Month: #EndParkinsons, World Parkinson Coalition, and Community Service

Inspirations knock and hang around for a while and wait for some kind of response, which is the beginning of a creative act.” Thomas Moore

“What you do makes a difference, and you have to decide what kind of difference you want to make.” Jane Goodal

Introduction: In 1980, a Dutch horticulturalist, J.W.S. Van der Wereld, honored Dr. James Parkinson by naming a tulip after him. Thus, the tulip is a symbol for Parkinson’s Disease.  April is dedicated as Parkinson’s Awareness Month. By reading this post and the many other Parkinson’s blogs/sites, we are joined together to promote awareness.  Thus, goals of the month include increasing knowledge about Parkinson’s and better appreciation of the disorder in the USA and around the world. The  specific goals of this post are (i) to describe the #EndParkinsons  campaign from the Parkinson’s Disease Foundation (PDF), (ii) the World Parkinson Coalition (WPC), and (iii) community  service.

“Do stuff. Be clenched, curious. Not waiting for inspiration’s shove or society’s kiss on your forehead. Pay attention. It’s all about paying attention. Attention is vitality. It connects you with others. It makes you eager. stay eager.” Susan Sontag

#EndParkinsons and Thunderclap: The Parkinson’s Disease Foundation (PDF) is  promoting an interesting idea for awareness month, a thunderclap using the hashtag #EndParkinsons.Thunderclap is a tool that lets a message be heard when you and your friends say it together. Think of it as an ‘online flash mob.’ Join a Thunderclap, and you and others will share the same message at the same time, spreading an idea through Facebook, Twitter, and Tumblr that cannot be ignored.” (https://www.thunderclap.it/faq)

The PDF campaign, which is based around social media status, is being programmed to go off on April 15 around the world spreading the news to cure Parkinson’s. Posting a message simultaneously should be a very notable event for Parkinson’s awareness.   And this message is being sent by everyone regardless of their status within the Parkinson’s community (i.e., people with Parkinson’s, family members, care givers, advocates, researchers, and health professionals). The second phase of this PDF campaign is to donate your social status profile using the same link below; this further highlights  your role in the Parkinson’s campaign. Can you imagine how powerful it will be as many different social accounts share the same message at the same moment. The PDF #EndParkinsons campaign can be accessed through the following URL:
https://www.thunderclap.it/projects/39404-endparkinsons?locale=en

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“For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You’d be surprised how far that gets you.” Neil deGrasse Tyson

World Parkinson Coalition (WPC):  The official mission statement is as follows: “The World Parkinson Coalition® is a nonprofit organization dedicated to providing an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. By bringing physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, we hope to create a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease.” (http://www.wpc2016.org/)   What is my interpretation of the WPC?   I see it in many different forms: first, as an avenue for providing information about Parkinson’s worldwide; second, as a key unifying forum for all of the Parkinson’s organizations; and third,  it epitomizes a ‘melting pot ‘ for all good things related to Parkinson’s.  Thousands of people will convene in Portland, Oregon this fall for the World Congress on Parkinson’s organized by the WPC.  I am very honored to be a part of the WPC as I was recently asked to join the Communications Committee  (http://www.wpc2016.org/?page=2016Communications&hhSearchTerms=%22communications%22).  I stand in awe of the amazing people of the Communications Committee; they are totally dedicated to Parkinson’s.   And I promised myself not to be a ‘poser’, and actually contribute as much as I can to this committee.

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“It’s hard to beat a person who never gives up.” Babe Ruth

 Community Service:  Last fall, my team and I participated in the Moving Day NC Triangle  walk for Parkinson’s. This year we walk again but I’ve been asked to join the planning committee. How could I say no to Jessie P: “I want to invite you to join our Planning Committee for the Moving Day® NC Triangle, the annual funds- and awareness-raising Parkinson’s walk! We need passionate and organized volunteers on this Committee who are dedicated to the cause of uniting the Parkinson’s community – and based on your efforts, I think you’d be a great addition!” It’s a real honor to be on the planning committee for Moving Day NC Triangle. I do look forward to the monthly meetings and the planning sessions;  I will do all I can to make the  2016 walk a success.
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“Live your truth. Express your love. Share your enthusiasm. Take action towards your dreams. Walk your talk. Dance and sing to your music. Embrace your blessings. Make today worth remembering.” Steve Maraboli

Nonprofit organizations: The goals of most disease-focused nonprofit organizations are relatively straightforward:  recruiting donations,  funding research, education/outreach/awareness, and enlisting volunteers to help promote the message and do the work. For over 20 years, I was involved with the American Heart Association (AHA) as a “volunteer”. My volunteer duties for the mid-Atlantic affiliate of the AHA  (with an annual budget of ~$50 million per year)  over the years consisted of being a grant reviewer, chair of a grant reviewing team, member of the research committee,  chair of the research committee, and finally, a member of the Board of Directors. The AHA is a well-respected organization because they do such a great job of getting the important message out to the public and they utilize a large amount of funds for research purposes.

Inspiration in Parkinson’s: Today, I am truly inspired by Parkinson’s. My new volunteer commitment is to Parkinson’s. My inspiration are the many people with Parkinson’s; I will work as hard as I can in this area for as long as I’m able.

“Don’t ever give up.
Don’t ever give in.
Don’t ever stop trying.
Don’t ever sell out.
And if you find yourself succumbing to one of the above for a brief moment,
pick yourself up, brush yourself off, whisper a prayer, and start where you left off.
But never, ever, ever give up.”
Richelle E. Goodrich

Cover photo credit: https://wallpaperscraft.com/image/tulips_flowers_close-up_sharpness_29510_3840x2160.jpg

2 thoughts on “Parkinson’s Awareness Month: #EndParkinsons, World Parkinson Coalition, and Community Service”

  1. Frank

    Thank you for this communication.

    I’m fairly new in the PD community. I would like to find a source of info that describes the most current “cure” candidates and what makes them a probable, and , an educated guess as to when it will be available. I think funds would pour in, if needed.

    Thanks for your efforts, inspiration and hope.

    Richard W Rush Hudson Rush Co

    >

    Liked by 1 person

    1. Richard, thanks for your comments on my latest post, very much appreciated. I have in the works a blog on “future prospects for therapy in Parkinson’s.” As a long time biomedical scientist, my academic career has been spent looking at data and making interpretations. Happy to speculate about the future treatment of Parkinson’s…. Stay tuned. Frank

      Like

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