1^st MAY in DOUZAT

The Festival Committee and the association for the “Blood Donations” had chosen us to be the beneficiaries of their annual walk. Good weather guaranteed on this first day of May and beautiful energy with all participants.

Mélissa and her father Serge, our Vice-Chair, shared their expertise by experience of living with Cutis Laxa. € 684 were raised.

1^st MAY  in SIREUIL

 For many years Serge has been involved in the organisation of the “Trail du Brin d’Aillet” in his town of Sireuil.

Every year, Cutis Laxa International receives the benefits of this friendly event which welcomes many participants. The financial statement is not yet finalized.

25 ^th MAY in SAINT PIERRE DE CHANDIEU (France)

Roxanne’s parents once again put all their energy into running the Cutis Laxa Internationale stand during the flea market organized in their town. Information on the disease, various contacts and sale of merchandise; another great day for the benefit of CLI with nearly 170 €.

22 ^nd JUNE in SIREUIL 

Second annual event organized in Sireuil, where our Vice-President and his daughter Mélissa live.

Every year as usual, the triathlon offers a competition in three sports: cycling, swimming and running. Cutis Laxa International has been a long-time beneficiary of this event. The two sporting events in Sireuil meant we received €2,500 in 2024. The assessment is underway for 2025, so we do not yet know the final total.

18^th MAY in LYON (France)

A great festive moment in the heart of the city of Lyon, the “Heroes’ Race” took over the Parc Gerland.

This event brings together volunteers from many associations, each one responsible for collecting donations for their association from their relatives, families, friends and colleagues.

   We had 7 “Heroes”: Roxanne’s father, mother, aunt and great-aunt, Cécile’s husband and sister-in-law, as well as one of our researchers in Lyon, Professor Romain Debret. They all worked hard to raise more than €5,700. A thousand BRAVOS to all of them.

To top it off, thanks to Roxanne’s mom and the fabulous costumes she made and brought, we won the Best Costume Award: an extra €500 in our kitty.

 

A joyful, friendly day, full of laughter, joy, shared happiness and a picnic under the cool of the trees.

 

Thanks to Roberto Trapletti, several towns in the Region of Bergame mobilized for Daniel, suffering from Cutis Laxa, to organize events to the benefit of Cutis Laxa Internationale.

The Chair, Marie-Claude Boiteux together with Cécile travelled to Bergame to support this great initiative and answer  jounalists’ questions for the local television channel.

It was a beautiful first event and a strong commitment from the region’s authorities that generated € 5,900 in grants and donations.