Celebrating a year of progress: the association's journey and results.

A year ago, the "Lasst uns MDS heilen - DupMECP2" association was launched.

The history of the association began with Matteo's diagnosis in 2021: after thirteen years of uncertainty and struggle on the part of his parents, David and Caroline Covini, they were finally diagnosed with the duplication disease MECP2, which is a rare disease of which there are only 260 cases worldwide.

United by their love and the desire to make a difference for children affected by MDS, David and Caroline, both scientists, embarked on a remarkable journey. This journey led to the creation of 'Lasst uns MDS heilen', an organisation dedicated to accelerating research, providing support and promoting unity between families facing this challenge.

Nel maggio 2022, mentre mettevano in luce le lotte dei genitori contro le malattie rare e sensibilizzavano i media sulle MDS, i Covini hanno incrociato le famiglie Molnar e Curic, direttamente colpite dalla sindrome da duplicazione MECP2. With a strong desire to contribute to the efforts of their children, these two families joined forces with the association's executive committee, forming a formidable and dedicated team.

Questa date non solo segna la creazione dell'associazione, ma celebra anche gli incredibili sforzi compiuti nella lotta contro la sindrome da duplicazione del gene MECP2. In just one year, significant results have been achieved:

• Un team forte e un sostegno globale: The association's executive committee, together with scientific experts, family members and friends, has brought together more than 130 members from over 10 countries. Together, we form a global network committed to changing things.

• Multilingual Piattaforma informativa: The association has launched www.dupmecp2.euMECP2, a website offering information in several languages on the duplication sindrome MECP2. This platform acts as a centre for knowledge and advice to support families in their efforts.

• Eventi e raccolta fondi: The association's first online fundraising event raised public awareness and demonstrated the power of collective determination. Generous donations have been received and an ambitious mass fundraising project is currently in the planning stage and should be launched in autumn.

Oggi, più di un anno fa, siamo pieni di emozioni e desideriamo esprimere la nostra immensa gratitudine a tutti coloro che hanno partecipato a questo viaggio. Your support is incredibly important.

Every step we've taken, every suggestion we've made and every legacy we've created has contributed to our collective hope for a brighter future for our children.

Riflettendo su ces risultati, il nostro team rimane fedele al suo impegno. This is the celebration of a year, but it's also a reminder that there's still a lot to do. The journey is not over yet and we are all looking forward to what will come.

With determination, unity and progress as its guiding light, the association continues to move forward.