A major fundraising event was held in Lauterbach on June 1, 2019. The fate of 12-year-old Maya, who suffers 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. The best help is, of course, an effective therapy that halts the terrible progression of the disease. But such a therapy does not yet exist. Extensive and time-consuming further research is required.
There are major research deficits in MPAN because too few researchers worldwide are working on it, the financial resources for the implementation of sustainable, promising MPAN projects have so far been insufficient and, in particular, essential findings from basic research are still lacking in order to achieve a breakthrough.
Stephanie Matthiesen, Maya's mother, spoke movingly about the great willingness of people in her region to help: "Edeltraud Closen from Gasthaus zum Warndt didn't know Maya personally at first. And yet she and her team, with great support from the members of the Lauterbach volunteer fire department, put together a charity party for Maya within just under two months that was second to none: including road closures, a huge raffle with fantastic prizes from fantastic sponsors and great performances throughout the day. Food and drink were well catered for and the children were able to let off steam on the bouncy castle, on a fire ladder and by stacking crates. An unbelievable number of people were there and everyone gave their all to help and celebrate. Every hug, every kind word and every smile did us good. We are very grateful for that."
"The proceeds from the event are absolutely amazing," she adds. "More than 19,000 euros have been raised for research through this festival. With this amount from the festival and the funds we have continued to generate, we have so far been able to reach the incredible donation amount of more than 120,000 euros. This fills us with hope that MPAN research will receive a boost and sustainable impetus as a result. We would like to thank all our donors.
Hoffnungsbaum e.V. is making every effort to use the funds now available for MPAN research for quality-tested research projects as soon as possible. Projects are needed that can clarify the underlying disease mechanisms in MPAN, identify potential treatment options or test the efficacy and safety of new treatment approaches in clinical trials. The money raised in the fundraising campaign will make a substantial contribution to this.