The aim of our non-profit organization is also to raise awareness about the disease that affects Noé and its symptoms. We place a particular emphasis on visual impairment by trying to introduce people to Braille or blind football.
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What is Braille?
Braille is a tactile writing system that allows visually impaired people to read and write. It represents the letters of the alphabet using raised dots. These dots are arranged in two colums of three dots each (a total of six dots), as shown in the picture on the right. The dots are numbered from top to bottom and from left to right. Each letter or symbol is formed using a combination of one to six dots. Numbers, punctuation marks, and even musical notes have their Braille equivalents, making a total of 63 characters. Braille is written using a Perkins Brailler on thick paper, which allows each character to stand out in relief.
Braille is a major tool for social inclusion, as it allows blind or severely impaired people to read and write. In 1825, Louis Braille presented this alternative writing system to the Royal Institute for Blind Youth, which recognized its relevance. Since then, Braille has become the universal writing system for visually impaired people. It can often be found on medecine boxes or on elevator buttons. Unfortunately, only 15% of visually impaired people know how to read Braille in France (French Ministry of Culture, 2023). Below, you can find the Braille alphabet, the Perkins Brailler, and a page written in Braille.
Noé began learning Braille thanks to the SESSAD (specialized care and education unit for visually impaired children). He keeps on learning Braille at home thanks to Lego Braille. He has already memorized many letters that he can recognize by touch. He practices reading the letters of his friends' names on his light-up chalkboard, and then writes them using Lego Braille. At home, we also do exercises using ideas from the Abracadabraille website.
Noé also created two tactile books in his pre-K class with his teacher, Sylvie. He was able to tell stories to his classmates and at home. He loves these books. They help him learn, develop his oral language skills, and foster his creativity. He has begun reading words and sounds. He enjoys identifying the initial letter of a word by listening to its sound. At the same time, he can also read words printed in large characters.
I also completed a remote Braille training from March to July 2025, which allows me to help Noé learn and memorize letters. At home, we practice using an egg carton and table tennis balls to form Braille letters.
People with visual impairments can practice various sports, such as blind football. Blind football is a parasport that adapts soccer for people with visual deficiencies. It can be played by people who are visually impaired or blind. However, in competitions or at the Paralympic Games, only blind players (B1) are allowed to participate. This is why we also try to raise awareness about this sport, to show the range of possibilities available to people with visual impairment.
The players compete on a field with side boundaries. Each team has four players on the field, as well as a guide positioned behind the goal to direct the players. The ball contains bells so that players can locate it through sound. In the B1 classification (blind players), all players except the goalkeepers wear blindfolds to ensure fairness, in case some players are not completely blind.
In addition, we take part every year in Rare Disease Day. Originally, this day was only European, as it was created in 2008 at the initiative of the European Organization for Rare Diseases (Eurordis). It later became international and is now celebrated in 106 countries, with more than 600 events organized around the world. It takes place every year on the last day of February (February 28, or February 29 in leap years).
The day is dedicated to shedding light on the daily lives of people affected by a rare disease. We try to participate every year. The goal is to advocate for equitable access to diagnosis, treatment, care, and social opportunities.
There are various ways to take part in Rare Disease Day, as indicated on the official Rare Disease Day website: sharing a photo on social media to show support for people affected by a rare disease, posting statistics to raise awareness among those around us, or even organizing an event in our town (such as a photo competition or a march). For example, last year, the nonprofit Cure MCOPS12 published Noé's portrait on its website in honor of this day. You can find the portrait by clicking on the picture below.
Here are a few facts to raise awareness on this topic: more than 6 000 rare diseases have been identified worldwide. 72% of rare diseases are genetic, and 70% of them begin in childhood (Rare Disease Day). Sixty children worldwide are affected by the genetic condition MCOPS12, which Noé has. We are taking part in the clinical study led by researchers at Sainte-Justine Hospital in order to learn more about this neurological disease.
Noé's portrait is available on the Cure MCOPS12's website here!
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