Not fade away

The 34 years old Rebecca Alexander is psychotherapist, spinning instructor and volunteer. She is almost blind and seriously hard of hearing because of Usher Syndrome. ‘Not fade away’ is a deeply touching exploration of the obstacles we all come across: physically, psychologically and philosophically. Rebecca describes her journey starting from a teenager who tries to hide her handicaps to a woman who can see the world as it is. Although Rebecca is living in an ever darkening world, this does not prevent her from living with joy and enthusiasm.

This book will be filmed featuring Emily Blunt in the leading part. The release date is not known yet.

The enemy comes from aside


‘De vijand komt van opzij’ is the second novel by Jan de Kort (1951). This novel tells the story of André. André is hard of hearing and is slowly getting blind, which is a well-known situation for the author. Although some facts about the life of the author are mentioned in the novel, the rest of the story is entirely fictitious. In ‘The vijand komt van opzij’ Kirsten tells the story of her friend, in whose hectic life things always go differently than expected. This is highly recognizable and in that sense ‘The vijand komt van opzij’ is a page turner according to a co-reader.

The secret of the guide dog


Sofie loves Bo. Her father’s guide dog is the sweetest dog of the whole world.
But then daddy starts going to work by cab and he does no longer need Bo. She has to go.
Sofie determines that this will not happen. Bo has to stay!
The decides to hide Bo. That is the best solution, isn’t it?

Annemarie Jongbloed is text writer and author of children’s books. Het geheim van de hulphond’ is about a child with a deafblind father and it is based on experiences in her family.

She writes columns about living with a partner suffering from Usher for the Usher Syndrome Foundation.


Beyond the Muted Darkness


The photo book Beyond the muted darknesswas launched in Pakhuis de Zwijger on 31 August 2017. This book contains photographs of forty people suffering from Usher Syndrome taken by forty photographers. Beyond the muted darkness shows’ positive and strong pictures of the people suffering from Usher Syndrome. Each photo is accompanied by a short story of both the photographer and the person on the photo.

Photo book ‘Beyond the muted darkness’ was established by initiator and publisher, Marco Groenewegen. Forty top photographers, including Linelle Deunk, Koos Breukel, Reinier Gerritsen, Julie Vielvoije and many others, cooperated in making this book. Humberto Tan had his photograph taken by Sacha de Boer and wrote a foreword.

The blind leading the blind


“A hilarious boost for the spirit for everyone in a time of crisis

This is a story about Niek and Joyce.

Niek has a spinal cord lesion and Joyce suffers from Usher Syndrome, which will slowly make her both deaf and blind. Of course, these things are not easy to live with, but these two are coping well. They sure do: they literally draw full houses as inspiring speakers.

Until the coronavirus suddenly puts a stop to these meetings. Niek and Joyce are in sackcloth and ashes. Or rather in a walk-in wardrobe and at the kitchen table. Their work is gone, their health is threatened, all the news is bad news and hugging is no longer allowed. Niek withdraws into himself under his duvet and Joyce turns to chocolate.

However, after a while they are cannot suppress their natural optimism any longer and so they start searching for new ways to make themselves useful and to tell their stories. This goes by trial and error. Niek tries singing for a while (not a good idea) and Joyce tries doing odd jobs (not a good idea either). Still, their search does lead them somewhere eventually and they gain a lot of insights along their ways. It also results in this book: a hilarious boost for the spirit for everyone in a time of crisis.#sterkercoronadoor


Not hear, Not see, do speak


If your world becomes dark and quiet, will you be quiet as well?

When Joyce was seventeen years old, a physician told her that she would be of no value for society. He advised her to learn a language. “Then you can perhaps translate a book some time.” That was all that was in it for her, according to him.

At that moment, Joyce has just found out that she suffers from the very rare Usher Syndrome, which would gradually deteriorate her hearing and seeing in the course of time and cause her to be deaf and blind by the time she would be forty years old. Because of this diagnosis she was in a hurry: she wanted to see everything, learn everything and experience everything before her world would be definitely dark and quiet. She continuously fought against her disease and she desperately searched for a way to see the good of it – until she realised that she could never win this fight. Then she started to believe that she had something to tell the world. The fact that she would no longer be able to hear or see some time in the future did not necessarily mean that she would also not speak.

Now she is married, mother of two children, entrepreneur and a popular speaker. She cannot stop the approaching darkness and quietness, but she can use her story to inspire others and to learn how to better cope with changes.

And no, she never translated a book. She did, however, write one. And some book this is!


Séverine sees it differently

Séverine was diagnosed with Usher syndrome 20 years ago. Her deteriorating lost of sight and hearing does not make everyday life easy. However, she still trains for the alternative Four Day Marches, together with her buddy. #SupportofSport


Unfortunately, this film is spoken in Dutch with Dutch subtitles. Turn on automatic subtitles in YouTube


For Jackson

Click on the photo to watch the film


A documentary made by Luca van Turnhout and Linse Chantrain

How does anyone deal with such a diagnosis? We follow Carolien, Willem and Jackson in their daily lives. Although they are daily confronted with Usher Syndrome, they live from one day to the next and try not to think of the future too much. This is not always very easy, though.

A documentary as a bachelor assignment for the applied audiovisual communication (BATAC) training of the THOMAS MORE HOGESCHOOL in Mechelen, the Netherlands/2020.

An article in connection with this mini-documentary: I have a haste for life, because of him’.

This film is spoken in Dutch and does have English subtitling.

A sense of black

The documentary ‘A sense of black’ takes its viewers along in the world of the blind artist George Kabel (1955) from Eindhoven, the Netherlands.
George is sculptor and one of the 800 Dutch people suffering from Usher Syndrome. For George this means that apart from being blind, he will become deaf as well.

The story of George Kabel is the story of overcoming a major setback and giving life a new meaning.

The film had its première in December 2018 during the Eindhoven Film Festival in the Van Abbe museum.

Script, scenario and production: Gerben Zevenbergen
With English subtitling.



How is Machteld Cossee doing today?

Overwhelmed with reactions
The film moved people from Machteld’s wide social circle as well as other viewers Director Hetty called the number of reactions to the documentary ‘overwhelming’. Machteld continues: ‘People around me know that I suffer from Usher, but the film zooms in on this. It shows the rough side of Usher.’ She confesses that she did not pick up the children from school herself the first four days after the broadcast. ‘When I appeared in the schoolyard again, other parents came to me. They offered their help and said they now had a better understanding of what was going on. How often was I called ‘arrogant’ or ‘a muddlehead’? I would never call myself that. The film gave people more insight.’ Hetty adds: ‘People looking at Machteld from a distance don’t have any idea how much difficulties she continuously has to overcome. I saw her on a photo with her husband Lars on the tandem in the JAN and I immediately knew that I wanted to watch at things along with her.’

The film did not only have influence on Machteld’s environment but on that of her fellow sufferers as well. ‘Six months ago, a woman I didn’t know came at my door. She stammered a bit while she was standing there and I really had no idea why she had come. Her son appeared to suffer from Usher. When she saw me walking one time, she mustered up her courage and rang at my door. In the period after that we had coffee together twice to talk about this.’ Actually, Machteld has become a kind of standard bearer. ‘Usher Syndrome Foundation received a lot of reactions after the broadcast and various young people had their “coming-out” as I call this after the film.’

Put things into perspective because of Usher
Hetty Nietsch made the film with her daughter Lisa Bom. ‘She had just finished the academy of arts. Working on a film for a few years really costs a lot of money, so we took a small camera and started to work with the two of us. The cameras became better in the course of the time.’ Lisa sometimes even slept at the home of Machteld and Lars.

Source: NPO
Text: Wieneke van Koppen
Photo: Lin Woldendorp