A moving event to raise awareness and support the charity

On 18 June, Gramatneusiedl (Lower Austria) hosted a remarkable event that highlighted the spirit of generosity and community. As part of the bike ride organised by the town of Gramatneusiedl, our association was asked to man the food stand.

Susanne and Gerald, esteemed members of the Board of Directors, were at the heart of this tour.

They organised and managed the food stand, where food and drink were available in exchange for a voluntary donation. Every donation made during the event went to support the association's initiatives. The stand was in full swing, with over a hundred visitors showing their solidarity and support.

Matteo, a courageous 5-year-old, and Philipp, a resilient 25-year-old, both with MECP2 gene duplication syndrome, were present. Their inspiring presence highlighted the challenges faced by people with this rare disease and amplified the importance of the event's mission.

The success of this event was amplified by the invaluable help of friends and supporters, who volunteered to organise and run the stand while proudly wearing the association's colours. The event turned out to be an unforgettable success.

We would also like to acknowledge the contribution of the Stiegl company, which provided all the drinks! In addition, delicious pastries, including coffee, and spreads were served.

Looking back on the event, Gerald says: "Ich bin überwältigt und unendlich dankbar" (I'm overwhelmed and infinitely grateful). Gerald is overwhelmed by the many volunteers who gave their time and energy, grateful for the vibrant and enjoyable atmosphere throughout the event, amazed by the large number of visitors who joined him, moved by the immense desire to contribute and make a difference, and encouraged by the curiosity and interest of visitors to learn more about the disease.

Susanne also expressed her feelings, exclaiming: "Was für ein toller Tag. Ich konnte und wollte meine Freudentränen nicht unterdrücken" (What a beautiful day. I couldn't and wouldn't hold back my tears of joy).

She expressed her sincere gratitude to all those who had made the event a resounding success for their association. Reflecting on the event, Susanne says: "Für mich war dieser Tag einer der emotionalsten seit Beginn unserer Reise. (For me, this was one of the most emotional days since the beginning of our journey).

She says: "Es gibt kaum etwas Schlimmeres als Hoffnungslosigkeit und sein Kind leiden zu sehen" (There's nothing worse than feeling hopeless and seeing your child suffer).

Their journey continues with renewed hope and determination for their son Philipp, knowing that they are not alone.

Susanne concludes: "Danke vielmals an alle, die diesen Tag zu so einem guten Tag für unseren Verein machten. 1000 Dank" (A big thank you to everyone who made this such a great day for the association).

Thanks to the collective efforts of organisers, volunteers, visitors and sponsors, a total of €1,500 was raised by the charity, demonstrating the incredible power of unity and compassion when directed towards a good cause.

We would like to thank Leni, Barbara, Ingrid, Nina, Robert, Hubert, Gerlinde, Albert, Susanne, Andi-Bub, Emilian and Marie for their invaluable help.

Our association would once again like to thank the Stiegl company for its generous donation of drinks. We would also like to thank the Klapa insurance company for organising the event and giving us the opportunity to present our association, and the Hirnich patisserie for supplying the cakes.

A big thank you also to Liebesblick for the beautiful material (T-shirts, bags, stickers).

And finally, a big thank you to Silvie who sponsored our association's t-shirts!

The press were there too! The event was published in two local newspapers.