From Andria to Celle di San Vito by bicycle for research and the right to treatment – ​​AndriaLive.it

To get from Andria to Celle di San Vito by bicycle, they traveled over 100 kilometers in more than 6 hours of pedaling. An undertaking that some cyclists have accomplished as part of the initiative called “Run Fornelia – The journey 2 – Bike Edition”, a race to raise awareness in Italy of Cornelia de Lange syndrome, a very rare genetic syndrome.

The race started on April 25th from Santa Maria di Leuca and will arrive in Vigonovo (province of Venice) on May 11th passing through Rome (Vatican City) for a total of 1,900 kilometres.

Cornelia de Lange Syndrome it is a multisystem and very rare genetic disease (1 case in every 45,000 – 60,000 births) and is characterized by multiple alterations of the face, hands and feet with delayed physical and mental growth. The “Run Fornelia – Il Viaggio 2 – Bike Edition” event aims to promote a fundraiser in favor of the national voluntary association “Cornelia de Lange”.

The association (born in 1997 on the initiative of a small group of parents with children affected by the syndrome) is busy in the organization of various projects. The most important, of all, is to contribute to identification of a possible therapy which, at the very least, limits the pathological effects of this disease which hits children so hard. The Association’s activities are almost exclusively based on the voluntary work of parents, friends and technical staff, who passionately dedicate themselves to carrying forward and in parallel, all the initiatives planned annually to achieve the pre-established objectives such as the dissemination of the existence of Cornelia de Lange and the protection of people affected by the syndrome by encouraging a wide dissemination of existing information.