News from Milly and her mission
On 22.12.2017 the Rhein-Neckar-Fernsehen (RNF), presented Milly and her family in the program RNFlife:
Emilia has BPAN. About a year ago, the parents of Milly, now 5, Rebecca and Markus Nielbock, received the diagnosis. Soon after, they contacted Hoffnungsbaum e.V. in touch and the family joined our NBIA support group. Then, as early as the summer of 2017, the Nielbock family, with the help of 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 the touching story of Milly and her family and gain insight into Milly's life with this subtype of NBIA, which was first described in 2012, the year Milly was born, and currently affects one of the fastest growing NBIA patient populations.
In the meantime Hoffnungsbaum e.V. more than 4,500 € have been collected for the benefit of BPAN research. You can further help to research therapy options for BPAN. On this Donation homepage you can learn more. Important: Please always mark your donation for BPAN research with "BPAN"!
In addition, reports on 12.01.2018 the Rhein-Neckar-Zeitung about Milly and the fundraising campaign in favor of BPAN research.
In a few months, the funds raised by then will go toward a BPAN research grant, which will be advertised and awarded by the NBIA Disorders Association.
Photo: Sonia Epple