Welcome

by Bram

A heartfelt welcome to our website. My name is Bram Platel and I am the chairman of this foundation that was founded to provide MS patients with reliable, scientifically based information.

In 2014 MS was diagnosed with me and the disease manifested itself by gradual, but rapid decline. I followed an extensive rehabilitation program for a year and at the end of 2015, I was unfit to perform my full-time job as a research scientist.

At the beginning of 2016, I was pointed to a TV broadcast about HSCT for MS, a treatment that appeared to have miraculous effects. As a scientist, but also as a patient, I wanted to know as much as possible about this promising therapy.

I found many groups on Facebook about this treatment. As a scientist, I was used to studying publications, questioning statements, and staying critical.

I soon realized that the majority of people on social media were not accustomed to critical questions and unfortunately experienced this inquisitive attitude as negative.

I found it virtually impossible to find easily accessible, scientifically reliable, information about the treatment. In addition, far from everything about the treatment was researched and proven.

At the beginning of 2017, one day after a routine scan for my MS was made, I was called by my neurologist. She told me that I should go to the hospital that day for a new MRI scan, this time it was to be aquired with the oncology protocol.

That night, my wife and I were told that large tumors were visible in several places in my brain.

A lengthy trajectory of diagnosis and treatment followed (I kept an English blog about this). In October 2017, after months of different chemotherapies, the last treatment was performed. It consisted of strong chemotherapy followed by a blood stem cell transplant, an HSCT treatment, a similar type of treatment that is used for MS.

Currently, I am doing well. I have committed myself to help people with multiple sclerosis by looking at scientific insights with a critical eye and communicating them in an accessible but in-depth manner.

This means that I do a lot of research, talk to experts and assemble information in an accessible way, so that people with MS who are interested in this in-depth information can get well informed.

The first two years I will focus on making information videos about HSCT treatment for MS. I chose this topic not only because it fits me, but it is very popular among a large group of people with MS. In addition, it appears to be a topic that people have strong opinions about, but about which no in-depth, understandable information based on scientific insights can be found.

I do this work completely voluntarily without pay.

Have a look at the information on the website, I hope that it is informative. Let me know if you have any comments or recommendations.

Bram Platel, Ph.D.

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