Our activity report for 2021:
- The main activities in the 2021 calendar year included the preparation of the articles of association and the trust agreement for submission to the Jena tax office
- A domain name Merlin-foundation.org was contractually agreed in advance for the website
- The donation account was opened at Sparkasse Mittelthüringen in Erfurt in August 2021
- To advertise the foundation, a flyer was created in terms of content and graphics with great effort by the board of directors and the board of trustees.
- On the occasion of the 72nd Annual Meeting of the German Society for Neurosurgery in June, Prof. Rosahl organized the first Neuro Run. A total of €2555 was donated as a result of this event.
- Various appeals for donations were well received and ensured a good financial start for the foundation.
At the annual meeting of those affected by NF2 in Mücke, Mr. Suter presented the newly founded foundation in a presentation. This event also generated a good inflow of donations.
- The publishing and distribution of the books “Wir Alle Part 1 and Part 2” was started by the member of the board of trustees and author Frederik Suter at the publishing house Edition Blaes. The profit from the sale of these books goes to the publisher as a donation.
- At the end of the year, the data of the donors whose donation amounted to more than €300 was sent to the finance department of the Ernst Abbe Foundation for the preparation of the donation receipts.
- At the annual meeting of the AG Neurofibromatoses on October 9th, 2021, the database as well as the book project “WIR alle” and the newly founded foundation were presented to a specialist audience by Anna McLean and met with broad interest – including among pharmaceutical representatives.
- The first project, led by the board member Mrs. Dr.med. Anna Lawson McLean, prepared and started the creation of a multi-centre database NF Registry”. The project had previously been reviewed and approved in terms of data protection law by the ethics committee of the State Medical Association of Thuringia. The programming of the database and a test phase were completed, so that at the beginning of 2021 with The systematic collection of data could be started. So far, 36 patients have been included. Among the entered data are detailed neurological, audiological and ophthalmological findings as well as exact volumetric measurements of tumors to estimate the growth rate for course assessment and therapy planning Acceptance among patients is very high. With funding from the Merlin Foundation, a research assistant will be trained to maintain the database in 2022.