Tous avec Noé (Everyone with Noé) is a non-profit organization created in order to support our son Noé who has been diagnosed with a rare genetic disease called MCOPS12.
Created in November 2023, this nonprofit aims to do many things that you can find below.
Indeed, we wish to ensure the best for our son so he can blossom.
Noé is a seven year old boy who is talkative, funny and smiles a lot. He has an older brother who's 12 years old and an older sister who is 16. He likes playing with little cars, riding carousel or playing in the snow. Koalas are his favorite animals and he has a stuffed koala named Krunchy, that is the reason why we chose a koala as the logo of our nonprofit!
In 2019, doctors told us Noé had been diagnosed with a rare genetic disease called MCOPS12. However, medical staff doesn't really know what it means, nor its consequences. The news of this diagnosis was overwhelming for us. It is a de novo disease, which means it is linked to a spontaneous mutation of the gene, as none of his parents has it in its gene pool.
Originally from Charente, we moved to Toulouse so Noé could receive adapted care for his sight and his cognitive deficiency. However, his daily care must be completed by intensive rehabilitation courses in France and abroad, which are expensive. Reasearchers from four laboratories across the world are also trying to find a treatment for this unknown disease.
MCOPS12 is a rare genetic disease caused by a mutation of the RAβ gene located on chromosome 3. Many symptoms are provoked by this illness, such as motor and movement disorders, ocular malformations or cognitive deficiency. People with MCOPS12 are often visually impaired. This illness was discovered recently, in 2013, and only sixty people have been diagnosed throughout the world. Hence, its treatment is quite difficult.
That is the reason why we have created this charity. We wish to help Noé and all the people who suffer from MCOPS12 to find therapies and treatment that may alleviate their symptoms. Indeed, current medical research on MCOPS12 gives us hope. On this website, we will talk about the goals of our non-profit organization and the events we organize in order to raise funds and raise awareness about rare diseases. Here, you can find multiple nonprofits who aim to further medical research that we support. You will also be able to see rehabilitation courses that Noé could take or awareness campaigns about the visually impaired.
Noé never ceases to surprise us, he keeps making steady progress. We believe in him. His love fills us with happiness.
There are many ways of supporting Noé : you can join our nonprofit, make a donation or buy one of our T-shirts with our logo. If you want to learn more, you can go directly on "Support our nonprofit" by clicking on the link below.
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