the dragon's tale
Hear the precious tale that speaks of the happiest people in the world. So joyful, you might feel as if there were no troubles in the world at all. But the opposite is true. It's just that they know how to handle them in this kingdom like no one else.
To two healthy parents, on a sunny day, a little Warrior was born. Like all parents, they loved him, cared for him, and there wasn’t a day they weren’t happy. However, over time, the parents noticed that something was not quite right with their little Warrior. They went from house to house, asking other parents, healers, and herbalists for help and explanations as to why their child was not like the other children in the kingdom. But no one had an answer. Time passed, and the parents grew more and more distressed. Then, one rainy evening, it happened - next to the Warrior’s cradle appeared an egg, from which peeked two dragon heads.
A Dragon named SMA permanently settled in the kingdom, striving for the strength of the little Warrior. If you think that from then on, the kingdom was shrouded in darkness, you are mistaken. At the very same time, the Warrior became a valiant knight. He had many experts who taught him how to fight the Dragon and plenty of helpers who fought by his side and helped him tame the Dragon with a magical sword. He fought because his parents gave him one important piece of advice - only the one who gives up their fight can lose. And that is something the Dragon will never experience in this kingdom.
Today, the little Warrior lives happily in the kingdom alongside the Dragon. The Dragon, who completely changed his life. They manage to live in symbiosis, but the knight still has to learn new things to be able to live the same life as his friends and helpers. A similarly precious story is lived by 160 young knights under 18 years old in the Czech Republic.
who is the dragon
The Dragon, known as Spinal Muscular Atrophy (SMA), unfortunately visits more than one kingdom. It belongs to the family of hereditary dragons that affect the peripheral motor neuron. As a result, the Dragon weakens muscles, and over time, this leads to the loss of muscle fibers (muscular atrophies). The SMA Dragon, with its frequency of occurrence, is rare, yet it ranks among the most terrifying creatures, from whose clutches few can escape.
Battling the Dragon is currently very challenging. However, educated healers have recently found a way to tame the Dragon - a magical potion called Spinraza. But the kingdom itself does not possess such wealth, so it must rely on the help of other good people. After all, gold coins still do not grow on trees in this kingdom.
up against the dragon
The first benefit Gala Evening was first organized in 2018 in the royal hall by a group of kind helpers who were not indifferent to the fates of little warriors. Their goal was to raise awareness of the issue, expand the discussion, point out the problems associated with fighting the Dragon, and the very costly production of potions, but above all, they wanted to offer everyone joy until the crowing at dawn. The proceeds from the entire event, attended by several hundred citizens, then went to the specific stories of the knights.
And because everyone greatly enjoyed the ball, the helpers decided to establish the SPOLU NA DRAKA Foundation Fund, which decided to help knights in other kingdoms as well. Then one word led to another, and a year to the day in 2019, they all organized this glory for the second time. And lo and behold, good people came again. And this time in such numbers that the piggy bank burst at the seams - 175,710 coins thus went where they were needed. And do you know what was the best part? Everyone rejoiced, danced, and sang until the white morning. It was no surprise, then, that they began to prepare something for the year 2020...
gala evening on the dragon
They sat and deliberated. They brainstormed. They racked their brains. They experienced dozens of sleepless nights. But even then, they knew how it would turn out. They just gathered courage. Until then, an old man said - let's do it, now or never. And so began the story of the third annual Dragon Gala Evening.
They found the most beautiful space in the entire kingdom and decided that subsequent editions would be held in the Municipal House, offering it to a larger number of good people. "But what would it be for fun without musicians and folk artists," they pondered. So, in the following years, they invited Anna K., the band Jelen, musicians from the group JEN, and the melodious saxophonist Saxofrancis.
"We need someone else with a heart in the right place!" someone exclaimed. They began to search for patrons who would be equally close to their idea. They found them. Olympic medalist and world champion in water slalom Vavřinec Hradilek, moderator Karel Kašák, actress and singer Eva Burešová, Michaela and Roman Tomešovi, Martin Písařík, and other famous nomadic artists became the main helpers alongside the knights.
And so the good deed was accomplished. The third, fourth, and fifth annual Gala Evenings managed to raise nearly 1.5 million coins for the little warriors, and everyone is looking forward to the next edition, to be held in the same space on March 9, 2024. The entire kingdom thus looks forward with hope to the future, when everyone will be able to open their hearts again.
song of the dragon
When not only the kingdom but also the whole wide world began to fight another Dragon, and collective joy was not possible, the locals decided not to just sit idly by in these sad times. They asked their friends, the nomadic artists, to take their instruments and bring smiles to people's faces with music, giving them hope that everything will turn around for the better. Thus, a unique connection was created that is unparalleled in the kingdom.