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Erasmus Medical Centre Hemophillia hasn't added a story.
Please read my story, but first I will introduce myself.
My name is Ronald Westerveld and I am called Ron. I have 2
bleeding diseases what have had a tremendous impact on my life and
even almost killed me a few times.
But I am lucky, lucky that
they found out that I am a so called bleeder, when I was 7 years old.
I have been misdiagnosed twice. When I was 7 & 11 years young,
finally when I was 15 they diagnosed me with not 1 but 2 blood diseases.
There are a lot of people in the world who do not have that
much luck. If they didn't diagnosed me as a bleeder just before my
tonsils extraction, I would have drown in my own blood. In 2008 they
finally could extract them with new developed medication. And that
improved my health tremendously.
But still a lot of people in the developed countries and
undeveloped countries have not that much luck and do die. For me that
is not acceptable.
Now I am looking for the funds that I lack to earn money to donate for 100% to professor Leebeek. My haematologist who is treating me for about 15 years as the professor before him was retiring. The Erasmus MC in Rotterdam, The Netherlands is treating me since my 15th year. And I want to do something back, because they saved my life a few times since then.
I have bought in 2014 a sailboat which should be seaworthy, but is
not. So I went to the original wharf and designer of my “Waarschip
725” for a restauration. Safety comes first, I am trying to get a
satellite internet connection sponsored. And the company I have asked
for it is now looking in to it.
But what I lack and do not have the funds for myself are:
- Solar panels
- Batteries to store the solar power
- An internet connection by satellite
- Auto-pilot
- Crossbow (building it myself, at least I try to and I am quite positive since I have
- better equipment as they did in the dark ages when they used it in warfare).
- Sea fishing rods and gear
- Desalination machine to make my own drinkable water.
And that is why I need a crowdfunding platform to raise € 30.000,-.
What will I do for the earth’s population, since this is a global
problem:
Even in western countries does not everybody has excess
to a Haematology Treatment Centre and does not all the hospitals have
the expertise in recognizing these diseases. So you can imagine that
in undeveloped countries with a less well developed health care people
are not recognised as being a “bleeder” or is the awareness how to
recognise the symptoms.
That is why I want to sail along the earth’s coastlines and meet the indigenous people who live in far and remote places and make a daily documentary which I will broadcast on YouTube to earn revenue that will be solely be used for Research, Development of better medication and Education of medical staff on a global scale.
When I am broadcasting this adventure / documentary I will attract (seek actively) the publicity some of the television programmes in The Netherlands to get the first coverage on television. As I am getting this attention I can use this to attract the local media in the countries which I will be sail in to create “Awareness”. Awareness is already a huge win, as the doctors will be getting aware so is the general public in cities and villages in those countries.
My goal is that I will save lives of people because of the awareness, and hopefully earn enough money with my YouTube Broadcasts to donate and help in creating better medication or even better a cure in the form of gene therapy. Because it is a fault in our genes that is creating this.
Estimated 1 or 2 % of the earth’s population has a bleeding disorder and still in western countries people are getting diagnosed later in life. And again in undeveloped countries this is an even greater problem.
I just need some help in raising these funds, and I will try to get these things sponsored as well. Everything I can get sponsored will lower the maximum amount of the € 30.000, - I need and mentioned before. But I have learned in my life never to bet on one horse.
And this is not a once in a life time adventure, as my ship needs a minimum depth of just 1 metre / 3 feet and a few inches I can travel up rivers and canals in a later stage in my exploration of the world and earning money to donate.
I am 41 years old so I can do this for the next 30 years at least,
and what I really want to do.
I have not got a wife or
girlfriend or children or other family, and I really want to make a
change in the world without profiting from it. I do not give anything
about money, experiences and stories are worth more than all the money
in the world. And if I can safe just one life in 30 years I have won.
But the chances of saving hundreds of lives just by awareness alone is
more likely.
I can only hope there are people who still care about people they do not know and had not the luck to be born in a well-educated country, like me and I guess like you too.
The amount is not that great, but great enough for me to cuff up, that is why I need your help. I have bought the ship last year, it is getting restored as we speak.
If you want to see, know and wants to get informed in what I am doing and already have done as well to see pictures of the restauration.
Please see:
https://www.facebook.com/humaninterestandsurvival/`
http://westerveldron.wix.com/vwillebranddisorder
Twitter: @vwillebrandd
And you can learn more about me my ship and the sponsors I already have.
The Facebook title and URL are a bit strange. That is just because I got aware of this global problem in the last 4 months as I have been thinking of earning money this way for 6 years now. Only the destination of the money has changed and I had to think of how I could attract media attention because that is a great win by itself.
I hope you will see how big the problem is and you can also checkout the World Federation of Haemophilia who resides in Canada. And is found with the following URL http://www.wfh.org/en/page.aspx?pid=492
As you will see there are “more” people with a bleeding disorder in the educated world as in the undeveloped world. And believing in the fact that in the undeveloped world the citizens have a better healthcare is not reality.
Please inform yourself and you will see as I did that this is a global problem as von Willebrand Disease is the most common disease it is a great starting point to address first. You can find a few communities who are doing the same as I do only just for their selves, and I think bigger and of the undiagnosed people with a bleeding disorder. That is why I need you to help me helping the global population.
Thank you for your attention and if you do not fund me, but you did get aware. I have already had a small win but I want to make a difference as you will see when you do your research in my plan. And you will, that is just normal at least I should investigate someone before I would fund him/her.
And I can only hope you will help me to do this safely as possible as I am also planning this with my physician. And I will set sail in 2017, I am determined to make this possible.
I have had my yearly check-up at the 29th of September 2015. I have a letter of proof that professor Leebeek knows, he will be sponsored in his research as the pharmaceutical industry doesn’t do it, so the academically hospitals will have to do it. And my hospital is just that.
Check Hemophilia on Wikipedia and compare it with the following link.
And you will see how big of a problem this is!
http://www.wfh.org/en/abd/carriers/carriers-and-women-with-hemophilia-en
1 of every 10.000 people have von Willebrand Factor / von Willebrand Disease in a problematic way. Otherwise 1 or 2% has this problem without knowing.
1 of every 30.000 people have haemophilia.
And then we have still different kinds of blood disease who have all the effect of getting immobilisation or even death of all those people.
If we have 7 billion people in the world we are talking about millions of people of whom 75% doesn't have the proper treatment or access to treatment at all.
If a natural disaster happens the charities are lined up.
And
we, we have to do it ourselves.
Please help me help all of them
who uses 2 year old expired medications (blood derives) or for those
who have no access to medication at all.
Save unnecessary deaths or immobilized people.
I am loosing money with a smile, I will never get a penny back for what I am doing. This is how important this is for me as I care about other people without my luck of having great professors to give me my treatment.
Just a selfless act of just someone to bring the awareness to the
people like the priests did hundreds of years ago. I just need to get
started safely.
If I can't raise the money I need, I am setting
sail in July as this has to happen. But it will decrease my chances of
surviving this. I will bet my life on it because this has to be done!
Want to fact check this statement
You can find it here:
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