The invitation from the Valeria Foundation to the RE(ACT) Congress in Berlin is critical for fostering collaboration among organizations dedicated to fighting orphan diseases. Such a meeting offers a unique platform for exchanging knowledge, experiences, and the latest developments in the field of orphan diseases.
I was particularly delighted to finally meet Julia Vitarello in person. Until now, we had only communicated via Zoom and phone calls. Julia is Mila's mother. Mila was the first child ever to be treated with an individual ASO therapy and sadly passed away shortly before Valeria. Julia is the founder of Mila's Miracle Foundation and an exceptional personality. Our encounter highlighted the many similarities in our experiences with our daughters, Valeria and Mila, and how our daughters' suffering motivated us to actively seek solutions and create hope for other affected families. Conversations with Julia consistently reveal what we have similarly experienced and how the development of new medicines, collaboration with laboratories, and research teams could be improved or altered. Julia tirelessly advocates for children with orphan diseases and has already made significant progress that gives many families new hope. Her ability to effect such positive change despite the enormous personal challenges she has faced makes her a truly inspiring figure.
I would like to express my heartfelt thanks to Julia Vitarello for everything she has achieved through Mila's Miracle Foundation. Her dedication and perseverance are a beacon of hope for all those fighting rare diseases. Thank you, Julia, for your ongoing struggle and the inspiration you provide to us all. Your work has not only changed the lives of many children and their families but also how the world views and approaches rare diseases.