Big News form the Charité
Dear supporters of Maje,
we wish you a happy new year 2021! Better than the last one and above all with more TOGEHTER and less hurdles!
We start optimistically into the new year, because since last week we know that there are first indications of a gene correction on Maje’s cells in the Berlin research laboratory of the Charité! ????????
Donations support important research step
We can proudly announce that a part of the donations received can support another important research work in the group of Prof. Dr. Spuler.
Grant application rejected
If you have a disease that occurs more frequently, the chances are good that drugs already exist or are (want to) be developed, because from a pharmaceutical company’s point of view, the investment is “worthwhile”.
But people with so-called “rare” diseases also want to benefit from the medical-technical achievements. No human being is “rare”, everyone is unique and everyone has the right to medical care. Research institutions and pharmaceutical companies should think more globally and consider the findings of all research projects as profitable.
At the Charité in Berlin
In July we were allowed to visit the wonderful team around Prof. Dr. Spuler in Berlin and get an insight into their work with muscle cells. The team is working hard to develop a therapy for muscle diseases.
Family Lindblad
Family Lindblad was my first contact with another CMD family. Hjalmar is 4 years old and has motivated the family to an annual run to collect donations for genetic research. In
everyday life, the Lindblads do everything they can to help their son develop a strong personality, because through his illness they have understood what really matters in life. I am very happy that this friendly family is the beginning of the interview series.
