Meet our loving, funny, persevering charming big boy Hubert . The pride and admiration we feel for him are indescribable. He overcomes the challenges he faces with infectious good humour, and his successes motivate usto support him relentlessly. 

From a very young age, Hubert was often very ill, and as the months went by, an overall developmental delay became apparent. After several months and numerous tests, we learned that Hubert has Smith Magenis Syndrome (SMS) as well as Birt-Hogg-Dubé Syndrome.

SMS is a rare disease; 1/25,000 births, and was discovered in 1982.

SMS is a complex disorder that affects several organs and systems of the body. It is characterized by congenital, behavioural and cognitive abnormalities. The resulting behavioural disorders, motor and language deficits and intellectual impairment affect learning and autonomy.

The problem with these diseases is that, because they are incidental and affect fewer people than better-known diseases, funding for research is challenging and pharmaceutical companies are not very interested in supporting it.

There are around 7,000 rare diseases, and only 500 of them have approved treatments. By funding SMS research, you are helping us to increase this figure and, above all, improve the daily lives of thousands of children and their families.

We place great hope in research, especially in that of Dr. Wei-Hsiang Huang. His research on SMS is part of The Brain Repair and Integrative Neuroscience Program (BRaIN) Program at the Montreal General Hospital. His work focuses on adjusting RAI1 protein levels and reversing SMS symptoms such as obesity and behavioural problems.

Thank you for helping us realize our dream of offering Hubert and all those affected by SMS a simple yet fulfilling life.

You can also make monthly donations by contacting us personally so that we can direct you to the right people.

Every one of your donations touches our hearts.

Many thanks,
Hubert, Olivia, Jérémie, Mélanie