Hi everyone,

Marco and I are proud to be launching another fundraiser for Cure CLCN4! Last summer's fundraiser was a major success, raising over £15,000 for the charity. Those living with CLCN4, and their families, are extremely grateful for the generosity and kindness shown by the supporters of last year's Brighton Triathlon fundraiser.

This year, we wanted an even tougher challenge! I’m excited to announce that on April 13th, we will be participating in the Ibiza 2024 Marathon!

My youngest sister, Daphne, was born with CLCN4, a rare genetic condition, resulting in intellectual disabilities, movement disorders, and developmental issues. Despite all the challenges Daphne faces, she continues to smile and bring joy and happiness to those around her. This fundraiser is inspired by her, and we hope to continue our efforts, spread awareness, and improve the lives of those children and adults living with CLCN4. As we work closely with the charity, we are able to see the huge impact your donations have on Cure CLCN4's operations.

100% of the donations will go towards a key project - the generation of iPSCs, cells that can be reprogrammed to act like different types of cells in the body (e.g neuron, muscle cells, etc), offering a platform to better understand the biology of CLCN4-related condition and opening the door to drug screening and the potential development of new therapies.

I’m very fortunate to have Marco take on this challenge with me! He’s an incredible friend and without him the charity wouldn’t be where it is today. Please feel free to donate and share this page! Thank you :)

Luca

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Additional charity information:

Cure CLCN4 is a UK-registered charity that aims to move scientific and clinical research on CLCN4-related condition forward. CLCN4-condition is a rare genetic condition that causes epilepsy, intellectual disability, and behavioural and movement disorders, among other symptoms. Having a loved one with this condition can be life-changing. Cure CLCN4 is here to help.

The charity's aim is to improve the understanding of the basic biology of CLCN4-related condition by funding research, creating and fostering a collaborative network of scientists and clinicians, and providing the scientific community with essential research tools. They also support families by providing them with up-to-date and accessible information on CLCN4, connecting them with other families to create a support network, and raising awareness among the medical community, and beyond.

Their ultimate goal is the development of effective therapies that improve the quality of life of those living with CLCN4-condition.