Exactly a year ago, the “Lasst uns MDS heilen – DupMECP2” association came to life.
The association’s story began with Matteo’s diagnosis in 2021. After three years of uncertainty and struggle followed for his parents, David and Caroline Covini, the diagnosis of MECP2 duplication syndrome was finally made, revealing a disease so rare that there are only 260 registered cases worldwide.
United by love and the determination to make a difference for children with MDS, David and Caroline, both scientists, embarked on an extraordinary journey. This journey led to the creation of “Lasst uns MDS heilen” an association dedicated to accelerating research, providing support, and fostering unity among families facing this challenge.
In May 2022, while highlighting parents’ struggles with rare diseases and raising awareness of MDS in the media, the Covini crossed paths with the Susanne & Gerald Molnar and Ana & Boris Curic families, directly affected by MECP2 duplication syndrome. With the strong motivation to contribute to the efforts for their sons, these 2 families joined the association’s board, forming a formidable and dedicated 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, remarkable achievements have been realized:
- A Strong Team and Global Support: The association’s board, along with scientific experts, family members, friends, have gathered over 130 members from more than 10 countries. Together, we form a global network committed to making a change.
- Informative Multilingual Platform: The association launched www.dupmecp2.eu, a website offering information in multiple languages about MECP2 Duplication Syndrome. This platform serves as a hub for knowledge and update for supporting families in their journey.
- Events and Fundraising: The association’s first online fundraising and event raised awareness and showcased the power of collective determination. Generous donations have received, and an ambitious massive fund-raising project is currently being planned and should be launched by autumn.
Today more than a year ago, we are filled with emotion, and we would like to express our immense gratitude to everyone who has been part of this journey. Your support has been incredibly important.
Each step taken, each effort made, and each connection forged has contributed to the collective hope for a brighter future for our children.
While reflecting on these achievements, our team remains dedicated to its commitment. It’s a celebration of one year, but it’s also a reminder that there’s more to be done. The journey doesn’t end here, and we’re all excited about what’s to come.
With hope, unity, and progress as guiding lights, Lasst uns MDS heilen marches onward.
