Matthiesen family launches fundraising campaign for MPAN research

On November 29, the Saarländischer Rundfunk (SR) broadcasting station referred to the
situation of the family and their fundraising campaign in an empathetic TV report drawn to our attention.

It was only in September that the Matthiesen family had received the diagnosis of MPAN for their 12-year-old daughter Maya. They were shocked to learn that the disease - like all forms of NBIA - is incurable and urgently needs to be researched further. That is why they went public and, in cooperation with Hoffnungsbaum e.V. , began to raise awareness of the disease with the help of a Crowdfunding-website to collect money for MPAN research. Anyone wishing to donate to MPAN research can send a bank transfer to the well-known Hoffnungsbaum donation account, stating "MPAN" or "Maya" as the intended purpose.

MPAN (mitochondrial membrane protein-associated neurodegeneration) is one of the four most common forms of the very rare NBIA disease group and, in addition to the characteristic iron deposits in the basal ganglia, leads inexorably to movement disorders and other symptoms that greatly impair life."