Matthiesen family launches fundraising campaign for MPAN research
On 29 November, the Saarländischer Rundfunk (SR) drew attention to the
situation of the family and their fundraising campaign in an empathetic way. Television report Attention.
Just the September before, the Matthiesen family had received the diagnosis of MPAN for their 12-year-old daughter Maya. They were dismayed to learn that the disease – like all forms of NBIA – is currently incurable and urgently needs further research. That's why she went public and, in cooperation with Hoffnungsbaum e.V. started to work with the help of a Crowdfundingwebsite to raise money for MPAN research. If you would like to donate to MPAN research, you can make your transfer to the well-known donation account of Hoffnungsbaum send. It is important that "MPAN" or "Maya" is indicated as the intended use.
MPAN (Mitochondrial Membrane Protein-Associated Neurodegeneration) is one of the four most common forms of the very rare group of NBIA diseases and, in addition to the characteristic iron deposits in the basal ganglia, inexorably leads to movement disorders and other symptoms that greatly impair life."