City Swim Amsterdam on behalf of ALS

By Jeroen Spangenberg

The sixth edition of the Amsterdam City Swim will take place on September 3rd. – raising money once again for Amyotrophic lateral sclerosis (ALS). The idea to start a fundraiser, culminated when friends of Weert Jan Weerts who suffered from ALS, wanted to do something to help their friend and others that suffer from ALS. That is why in 2012 the first Amsterdam City Swim was held in order to raise money for research on ALS amyotrophic lateral sclerosis, a disease that does not know a cure at this moment. The causes are unknown, that is why it is so important to raise funds in order to finance research on ALS.

Back in August 2011, 14 of Weert’s friends – the Hellespont Swimmers – decided to swim across the Hellespont. They then decided to take this a step further and bring the swim to the Netherlands. The driving factors are to raise awareness of ALS and funding for research into this disease on behalf of Weert Jan Weert and all other patients suffering from this relentless disease.

ALS is characterized by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurons) control the muscles that enable us to move around, speak, breathe, and swallow. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. Progress is generally rapid, with an average life expectancy of between 2 and 5 years from the onset of symptoms. Weert Jan Weerts did not survive the disease. He died on December 9th, 2013.

The disease affects the family, friends and caretakers very much. There is nothing the family can do except for giving as much support as possible, since there is no cure. The support that is needed obviously becomes quite intensive. The world started to get familiar with ALS when famous people and just regular people started to challenge each other with an ice bucket. Either you threw a bucket of ice over yourself or you could opt out by donating to an ALS organization, or you could do both.

Famous people that accepted the challenge were for example Mark Zuckerberg, George W. Bush, Bill Gates and probably the best of all, Donald Trump with two buckets of ice thrown over him by two attractive models, resulting in a bad hair day, although creating a lot of attention for this terrible disease. Queen Maxima of The Netherlands swam in 2012 on behalf of ALS more than 2.000 meter in order to raise money for ALS during the Amsterdam City Swim. She swam with eleven hundred other people and they raised together more than half a million euro. A year later almost 2 million euro was raised during this event.

Stephen Hawking is one of the most wellknown patients that have ALS. He supports the London City Swim, which is the equivalent of the Amsterdam City Swim. Stephen Hawking is an English theoretical physicist and cosmologist, he gives lectures and is author of many books, many people started to hear from him after the publication of his bestseller called “A brief history of time.” Stephen Hawking has a form of ALS that is slow-progressing. He is unable to speak, since that part of his body is also paralyzed. Stephen Hawking explains how he is able to communicate through his computer that is attached to his wheelchair: “A cursor automatically scans across this keyboard by row or by column. I can select a character by moving my cheek to stop the cursor. My cheek movement is detected by an infrared switch that is mounted on my spectacles. This switch is my only interface with the computer.”

“Through ACAT I can also control the mouse in Windows. This allows me to operate my whole computer. I can check my email using the Eudora email client, surf the internet using Firefox, or write lectures using Microsoft Word. My latest computer from Intel also contains a webcam which I use with Skype to keep in touch with my friends. I can express a lot through my facial expressions to those who know me well. I can also give lectures. I write the lecture beforehand then save it to disk. I can then use a part of the ACAT software called Lecture Manager to send it to the speech synthesizer a paragraph at a time. It works quite well and I can try out the lecture and polish it before I give it. I keep looking into new assistive technologies, and I have experimented with eye tracking and brain controlled interfaces to communicate with my computer. However, although they work well for other people, I still find my cheek operated switch easier and less fatiguing to use.”

Around 1.500 people in the Netherlands are ALS patients, just like Stephen Hawking. Unfortunately, 500 patients die and 500 people become new patients every year. During the Amsterdam City Swim, money is raised for The Dutch Foundation for ALS, which was founded in 2005 when three organizations came together and merged: Foundation ALS Researchfunding, Foundation Valscherm and Foundation ALS Centre the Netherlands. The Dutch ALS Foundation has the following goals: encourage scientific research to find the cause and treatment of ALS, improvement of the quality of care and life of ALS patients and last, create more acquaintance and understanding for ALS. For more information about the Amsterdam City Swim or if you want to donate look at http://www.als.nl