News from Milly and her mission
On 22.12.2017, Rhein-Neckar-Fernsehen (RNF) presented Milly and her family in the program RNFlife:
Emilia has BPAN. About a year ago, the parents of 5-year-old Milly, Rebecca and Markus Nielbock, received the diagnosis. Soon afterwards, they contacted Hoffnungsbaum e.V. and the family joined our NBIA self-help organization. In the summer of 2017, the Nielbock family started their own Website under the name "Milly's Mission" launched a fundraising campaign to support BPAN research.
On the website you will also learn more about Milly and her family's touching story and get an insight into Milly's life with this subtype of NBIA, which was first described in 2012, the year Milly was born, and is currently one of the fastest growing NBIA patient groups.
In the meantime Hoffnungsbaum e.V. more than €4,500 has been raised for BPAN research. You can continue to help research treatment options for BPAN. On this Donation homepage to find out more. Important: Please always mark your donation for BPAN research with "BPAN"!
In addition, on 12.01.2018 the Rhine-Neckar Newspaper about Milly and the fundraising campaign for BPAN research.
In a few months' time, the donations collected by then will be used to fund a BPAN research grant, which will be awarded by the NBIA Disorders Association.
Photo: Sonia Epple
