Charity campaign "Together strong for Maya" for MPAN research
A large charity event was held in Lauterbach on June 1, 2019. The fate of 12-year-old Maya, who is suffering from the NBIA variant MPAN, moves the whole town, many other people in Saarland and beyond. They all want to help Maya and her fellow sufferers with MPAN and so many donations have already been collected. Of course, the best help is an effective therapy that stops the severe course of the disease. But such a therapy does not yet exist. This requires extensive and time-consuming further research.
This is because there are major research deficits at MPAN because too few researchers worldwide are working on it, the financial resources for the implementation of sustainable, promising MPAN projects have not yet been sufficient and, in particular, essential findings from basic research are still missing to achieve a breakthrough.
Stephanie Matthiesen, Maya's mother, reports in moving words about the great willingness of the people in her region to help: "Edeltraud Closen from Gasthaus zum Warndt did not know our Maya personally at first. And yet, with the great support of the comrades of the Lauterbach volunteer fire brigade, she and her team have put together a charity festival for Maya within just under 2 months, which is second to none: including road closure, huge raffle with great prizes from fantastic sponsors and great performances throughout the day. Food and drink were well taken care of and the children were able to let off steam on the bouncy castle and on a fire ladder as well as stacking boxes. An unbelievable number of people were there and everyone helped with all their commitment and celebrated exuberantly. Every hug, every kind word and every smile has done us good. We are very grateful for that."
"The proceeds of the event are total madness," she adds. "More than 19,000 euros have been raised for research through this festival. With this amount from the festival and the money we continue to generate, we have been able to reach the incredible donation amount of more than 120,000 euros so far. This fills us with hope that MPAN research will receive a boost and a lasting boost as a result. We would like to thank all our donors."
Hoffnungsbaum e.V. makes every effort to ensure that the funds now available for MPAN research are used for quality-tested research projects as soon as possible. Projects are needed that can elucidate the underlying disease mechanisms in MPAN, identify potential treatment options or test the efficacy and safety of new therapeutic approaches in clinical trials. The money collected in the fundraiser will make a substantial contribution to this.
