Thanks for all the votes and views for Ray of Hope. The video seems to be going a bit viral (small scale with almost 2800 views) so please share it, like and comment which helps the algorithm of YouTube share the video simply because it’s already trending and most of all DONT FORGET TO VOTE BEFORE THE 20TH APRIL
A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER been diagnosed and not had medical or neurological attention.
The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination. They become isolated which worsens their disability and increases immobility.
Parkinson’s disease has no CURE.
Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.
We must explain that PD is not a curse, your fault or something to be ashamed of.
We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.
We need help!
I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:
– to be understood,
– to stop isolation,
– and to get treatment!
Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles, the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.
I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments. All this without marketing, imagine what we could do if we had a marketing budget.
Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021 but they need to be edited and marketed for maximum exposure.
I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…
Watch the first story which happens to be in English and catch a bit of the essence of this project.
I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.
I dream not for myself but for those who message me in pain in the middle of the night, Sara has no neurologist, no exercise coach, she can’t sleep because of the pain.
For Sara and many more… For Club Dopamine! May this project get the funding or passionate philanthropist it needs.
Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals.
Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world. See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:
I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!
But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point.
But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power.
The penny dropped.
So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made.
Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.
I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target.
It is funny how even on vacation the coincidental meetings with people can influence work.
I am having a fundraising for my birthday (28th of August) which is usally done through facebook fundraising but they won’t allow me to use their system because I live in Peru.
I wrote to Mark Zuckerberg an email similar to this:
I signed up in January to raise funds WPC for YOPD. The money goes directly to the World Parkisnon Congress (not to me) though it must be set up from my personal facebook account.
IT SEEMS STRANGE that I am not allowed to raise funds with facebook fundraising for my favourite charity? I went to the WPC facebook page and I can’t even donate? This fundraiser is for my birthday on August 28th. I’ll be 44.
If it was money just for a personal cause I’d understand but this fundraiser is part of a legitimate charity and you can find my profile has been on the website since January. https://wpc2022.org/page/wpc4yopd
I don’t get any money from the fundraising. I just want to help others get along as the World Parkinson’s Congress changed my life for the better.
I made a video about my story of combating parkinson’s by using gymnastics – it was one of the 12 finalists for the video competition. I have kept going ever since and now reach out to my community to help others by running classes and setting up an association.
I am already going to the WPC so this is to raise funds for others – especially my friends who can’t afford to go but I know they would benefit a lot.