Charities
The main aim of Guy’s journey was to raise awareness of Parkinson’s disease: he wanted to illustrate what it was like for a person like himself to be living with Parkinson’s; and also to draw attention to those people in Africa who have it, or maybe do not know that they have it, and to those people who live with and care for those people living with Parkinson’s. His mission was to start a conversation in societies and communities which stigmatise the condition, believing it to be some kind of contagious disease or the result of black magic.
In Europe the condition is well known. It may not always be well understood but medical expertise and medication are widely available to help manage the condition. This is not the case in Africa where drugs are not readily available and there are few neurologists, little understanding, and very little sympathy. In many places, Parkinson’s is associated with witchcraft with locals believing that having the condition can only mean that the individual has done something wrong in the past.
Guy wanted to impress on these people that this wasn’t the case. He sought to start a conversation in Africa both at a local and national level to destigmatise Parkinson’s and to explain that this disease was quite simply a neurological condition with devastating results. He also highlighted how important it is for Parkinson’s sufferers and their families to receive love and support, encouraging and empowering those affected to be brave enough to ask for help when needed. In every country he visited (all bar two), he repeatedly engaged with different African communities and Parkinson’s sufferers using radio and TV interviews, local rallies, workshops and village meetings to reinforce this message.
There are many Parkinson’s charities that exist around the world today, Guy has chosen to support the following:
Cure Parkinson's
This small efficient charity is focused on finding a cure. It raises funds for research and trials and is exceptional at connecting different research organisations to share and grow the work that is being carried out. This is the only charity dedicated to slowing, reversing and even finding a cure for this disease.
Parkinson's UK
Parkinson's UK is here for everyone affected by Parkinson's. It's the largest European charitable funder of Parkinson's research. Driven by people with Parkinson’s, scientists and supporters, fundraisers and families, carers and clinicians. Working together to improve lives and find a cure.
Parkinson's Africa
A small organisation which seeks to raise awareness of Parkinson’s disease in Africa, to help Parkinson’s sufferers and their families and communities, and to educate them to make better informed decisions. It does not have the resources to get involved in research. Parkinson’s Africa has outposts throughout the continent and one its ambitions is to facilitate self-help groups which could ameliorate the effects of Parkinson’s through local awareness building programmes, greater education and support networks among families and friends, and ultimately governments, all at minimal cost.
The Deacon Foundation
THE DEACON FOUNDATION
The Deacon Foundation has been established specifically to provide an efficient mechanism to collect and account for funds raised by all elements of the ”Running on Empty” project and to distribute those funds to the lowest level in the fight against Parkinson’s Disease and particularly to address the stigma associated with Parkinson's disease. Rather than those with the condition being abandoned and isolated the Foundation will provide grants to aid education and raise awareness allowing those with the condition to be cared and catered for, loved and treated with respect, and make their lives tolerable.
The Foundation will focus initially on Africa working closely with Parkinson’s Africa, but is not limited to Africa. Anyone who is making a small difference with limited funds and believes they could make a bigger difference with more resources wherever they are in the world can approach the Foundation for a grant. With no paid employees, no infrastructure, no travel costs, no society of supporters to satisfy, no headed stationary or stock room full of merchandise, every pound raised is most likely to be spent as expected – where it is needed.