top of page
1.jpg

An orphan disease, an association

Leber's hereditary optic neuropathy (LHON) is a genetic disease causing degeneration of ganglion cells, which manifests in the retina of the eye. The mutation of the genetic code of mitochondria leads to abnormalities. Deprived of energy, the cells can no longer correctly transmit information to the brain. And although the entire body is impregnated with the genetic defect, it is in the ganglion cells of the retina that the disease manifests itself...

"My sponsor was present and was able to show me the different techniques to improve my daily life. I found someone who really listens to me and who was able to help me become independent again despite the difficulties"

Damien, godchild of the association

Vous Ne Verrez Plus

The story of Julien Secheyron, Chair of the Association

One morning of October 2014, Julien, 37, was told that he was going to lose his sight... in three months.

He has just triggered a rare genetic disease for which there is no treatment. Soon, objects begin to escape him, faces, to fade away. The fall is dizzying. Julien has become what is called "visually impaired", he no longer perceives the world except through the bottom of a bottle...

Vous-ne-verrez-plus-Devenir-malvoyant-a-30-ans-et-guerir.jpg

Julien NOHL
280 Boulevard Raspail, 75014 Paris, France

 

contact@julien-nohl.com

​

(no reception at our office)

​

  • Instagram
bottom of page