Celebrating a year of progress: The association's journey and achievements

Exactly one year ago, the "Lasst uns MDS heilen - DupMECP2" association was founded.

The story of the association began with Matteo's diagnosis in 2021. After three years of uncertainty and struggle for his parents, David and Caroline Covini, the diagnosis of MECP2 duplication syndrome was finally made, revealing a rare disease of which there are only 260 cases worldwide.

United by their love and determination to make a difference to children with MDS, David and Caroline, both scientists, embarked on an extraordinary journey. This journey has led to the creation of "Lasst uns MDS heilen", an association dedicated to accelerating research, providing support and encouraging unity among families facing this challenge.

In May 2022, while reporting on parents' struggles with rare diseases and raising awareness of MDS in the media, the Covinis crossed paths with the Molnar and Curic families, who are also affected by MECP2 gene duplication syndrome. With a strong motivation to contribute to actions on behalf of their sons, these 2 families joined the association's board of directors, forming a strong and determined team.

This date not only marks the creation of the association, but also celebrates the incredible efforts made in the fight against MECP2 gene duplication syndrome. In just one year, some remarkable achievements have been made:

• A strong team and worldwide support: The association's board of directors, along with scientific experts, family members and friends, have brought together more than 130 members from over 10 countries. Together, we form a global network determined to make a difference.

• A multilingual information platform : The association has launched www.dupmecp2.euMECP2 Gene Duplication Syndrome, a website offering information in several languages on MECP2 gene duplication syndrome. This platform is used to gather knowledge and share new information to support families on their journey.

• Events and fundraising : The first online fundraiser and event raised awareness and demonstrated the power of solidarity. Generous donations have been received and an ambitious massive fundraising project is currently being planned and should be launched in the autumn.

Today, more than a year ago, we are overwhelmed with emotion and we would like to express our immense gratitude to everyone who has taken part in this adventure. Your support is incredibly important.

Every step we've taken, every effort we've made and every link we've forged has helped to strengthen our hopes for a brighter future for our children.

As we reflect on these achievements, our team remains true to its commitment. It's a celebration of a year, but it's also a reminder that there's still a lot to do. The journey doesn't end here, and we're all excited about what lies ahead.

With hope, unity and progress as its main driving forces, the "Lasst uns MDS heilen" association is forging ahead.