Registered Name: Stichting Parkinson’s On The Move
My wife Virginia and I, together with my sister and her husband, dreamt of starting a Foundation that could assist people who have Parkinson’s and who perhaps don’t have the best available opportunities in care.
I have had Parkinson’s for 10 years, having first being diagnosed with it at the age of 39. This is a shock at first to anyone so young, as it is a disease traditionally thought of as affecting older people.
In many ways I have been lucky enough to live in The Netherlands. There is access to good care, medicine and knowledge, and this has assisted greatly to make my life and dealing with Parkinson’s a little easier.
There are however many people around the world who must struggle daily with Parkinson’s as they do not have the same treatment and knowledge available to them.
Often the broader public, and at times even the medical profession, do not have a true understanding of what it is really like to live with Parkinsons, for older, but especially for younger patients. Outside of medicine and potential surgery available to but a select few, it can truly be the smaller, more practical things, that together with better understanding, can help the Parkinson’s patient and their family and friends around them.
As a family we have all had to learn what it is like to deal with this disease and the accompanying frustrations, hardships and misunderstandings.
However we have also come together through these experiences and helped each other to grow in so many ways.
In starting this Foundation we hope to bring together my personal experiences with dealing with this disease, but also collectively as a family.
Through sharing our knowledge and finding new ways to practically assist others we hope that they may benefit from our experiences and insights, and that we may find new ways in which to help make life a little easier for them.
My wife is Brazilian. She has an in-depth understanding of developing third world economies and the needs often overlooked or misunderstood by many in the developed world. My wife has also been there for all my daily needs, both emotionally and physically, seeing me through my great pain and keeping me sane, making me laugh and believe in the power of love.
My two sons have seen many changes to our family and life-style because of what Parkinsons brings and its not always been that easy for teenager boys to deal with the scope and challenges of it all.
Other family members, work colleagues and friends have all had to adjust. Sometimes a little understanding goes a long way and they have been incredibly supportive.
Four years ago I started my website “My Life and Parkinsons”. Later I branched out and introduced a Facebook page and a blog.
Through this I provide daily updates and insights on my life, tips on dealing with Parkinsons and new medical approaches and break-throughs.
The site is presently followed by many Parkinson’s patients worldwide and who contribute to the site or share their experiences online.
Many have expressed how much the site has helped them to believe again that Parkisons can be managed over time and and that they are not alone in dealing with it, that support is out there.
This has been my greatest achievement.
I continue to work, got re-married and now have a beautiful new baby in my life and continue to travel and explore life and the world. Every day is a battle but I try not to let the disease beat me, sometimes I have a moment of weakness but I need to pick myself up, dust myself off and keep going.
Through this I hope to give others hope – to not give up and to keep fighting. I hope that others who play a supporting role in a sufferers life, can better understand Parkinsons by better helping the ones they love.
“Parkinson’s On The Move”
Following some research, we found that Africa was one of the continents most needing assistance in this area.
Africa is also our origin.
Three of us were born there and we have a bond and understanding of the continent, its peoples, cultures and environment.
My sister has travelled to over 25 countries across Africa, and like-wise my brother-in-law and I have covered 10 of those countries between us.
We thought therefore that we would make a start there and slowly branch out to other destinations to connect globally.
The Foundation’s objectives are made up of both short and long term goals and through this we hope to be able contribute in a way to people and communities who do not have the necessary financial backing, or who live so remotely, that it’s just not possible to get the help they need.
The Foundations first objectives are:
- To set up a “Parkinson’s on the Move Foundation”, starting in Eastern Africa with Nairobi as a hub, and branching out from there.
- To promote public knowledge and awareness of Parkinson’s disease to communities.
- To inform communities, families and patients dealing with Parkinson’s, about research and developments via internet, literature and community gatherings.
- Develop a mobile phone App for Parkinson’s health care suited for developing communities, taking into account language and culture
- Set up a mobile clinic to promote Parkinson’s awareness, offering assistance to patients, families, care-givers
- Assist patients with walking aids, wheel chairs, grip handles, all specially adapted also for rural infrastructure
- Start family support programmes, for example, a coffee corner, where families can get together socially and learn how to cope with having someone this disease.
- Education programmes for Doctors, Specialists and Nurses on the latest developments in Parkinson’s care.
Contact us for more information on how you can be involved in the Foundation.
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