Jaber in time of the Covid-19 pandamic
Despite this, I try to survive day by day with the maximum possible energy (although I have very little). I try to walk a little every day and sometimes I have a coffee and hang out with some colleagues. My favourite hobby is playing the guitar, but I have stopped playing because of a tremor in my right arm. Apart from that, I enjoy spending time with my sister and one of her best friends. We even had the chance to visit the ancient centre of Tangier and enjoyed eating lunch by the sea.
Recently, we had the opportunity to visit the doctor at the end of September. He advised me to get a scan with magnetic resonance imaging (MRI) to clarify the current status of my brain. An MRI costs €400 which we paid for privately. The same day, I went with my sister to a private laboratory to do the analysis. After two days, we received my MRI analysis and immediately visited the hospital neurologist. Examination of my symptoms and the MRI results showed that I have a relapsing form of MS and some new lesions. The neurologist suggested the drug Ocrelizumab, which is sold under the brand name OCREVUS. Ocrelizumab was just recently approved in the US (2017), and in Europe (2018) and is designed for the treatment of relapsing forms of MS. This drug is administered through an intravenous injection. In my case, the plan is to apply the treatment twice a year. However, as of yet this drug is not included in or refunded by my health insurance plan and very costly. One dose of treatment costs about €12.000 and is therefore too expensive to pay for out of one’s private pocket. This is, of course, very disappointing for me as I want to be active and enjoy playing the guitar again and continue to participate in my studies. Both I have not been able to enjoy lately due to loss of motor control, but also because in a recent MS attack I have lost the ability to speak and communicate with the people around me, making it very hard to participate in life.
The treatment with Ocrelizumab is a big chance for Jaber to be able to enjoy those small things in life again, being able to use speech, play guitar again and enjoy having lunch by the sea. Hence the reason why the HNP started a fundraising campaign to help Jaber getting access to this treatment. Are you in a place where you can miss a little money? Click on the GoFundMe button and help this young man out. Every small amount of money is highly appreciated.
It is our great pleasure to publish our first newsletter!
Over the past months a lot of exciting things have happened over at the Humanitarian Neuropsych Project. As you may be aware of, we finally finished updating our website, which is now fully operational. Additionally, we also successfully launched our various social media pages, which we encourage everyone to follow! Simultaneously, the GoFundMe page for Jaber was also published, meaning that we can at last accept donations going towards his medical expenses. Specifically, we aspire to raise 12,000€ for his upcoming treatment round via this GoFundMe. In order to achieve this goal, we are now actively looking to establish a designated fundraising team. As such, we will shortly commence the recruitment process of qualified and motivated volunteers, who would like to participate in the organization of the various fundraising activities we hope to set up. We are closely observing the development of the Covid-19 pandemic and the governmental rules associated with it, in order to formulate appropriate charity events that are in line with the Dutch regulations put in place. Lastly, we take great pride in our first annual Brain Disorder Contest. What is the contest about? Well, let us tell you about it. In 2016 the Society of Neuroscience coordinated a competition about the consequences of concussions, in which participants had to create short informative videos. Drawing inspiration from said competition, Prof. Enriquez-Geppert invited her students from the 2nd year course “Introduction to Clinical Neuropsychology” to communicate their knowledge regarding a brain disorder of their choice by producing an educational video or design a medical fact sheet. This is in line with one of the HNP's main goals; spreading awareness for neurological and neuropsychological diseases and issues. The most creative pieces will be awarded with one of our favourite books by Oliver Sack - "The man who mistook his wife for a hat". We will joyously keep you updated on the results of the Brain Disorder Contest, as well as on the other facets of our progress!
Until next time,