Fit and connected: Alpha1 Germany wins award for exercise and exchange

Frieda Wilkens, as appeared in Alpha1 Journal 2/2024.

Besides providing fundamental and essential knowledge about Alpha-1 Antitrypsin Deficiency, networking among affected individuals is of paramount importance to us as an association. However, since our Alpha1 members are scattered throughout Germany, personal exchange on disease-related topics is sometimes quite challenging. The pandemic has shown us that platforms like Zoom or Teams can create a forum to facilitate this exchange despite geographical distance. The importance of such options is evident in the high demand for the pulmonary exercise classes with Peddar (Peter Kukry). Free classes are offered every Friday for Alpha1 members to help incorporate more movement into their daily routines. I probably don't need to explain how crucial sufficient daily exercise and proper breathing are, especially for those with Alpha-1 Antitrypsin Deficiency. Furthermore, the class offers the opportunity to meet others in similar situations and share the joy of exercise. With the additional offering of memory training on Tuesday evenings, you'll also stay mentally sharp, a skill that is far too often underestimated.

Because we, as an association, want to continue offering you the opportunity for such training and are convinced of its importance, we applied for the 2024 sponsorship award from the Pharmaceutical Companies of Hesse/Rhineland-Palatinate/Saarland (Pharmaceutical Companies Hessen/Rhineland-Palatinate/Saarland e.V.). The Pharmaceutical Companies Fund awards an annual prize for volunteer work and self-help initiatives. This year's competition focused on the theme of "Helping People Help Themselves," which prompted us to submit our "Fit in Body and Mind" project. As a result, we were invited to the award ceremony on November 4, 2024, at the VCI House (German Chemical Industry Association) in Frankfurt am Main. Peddar and Marion Wilkens, accompanied by Jutta Stewart and myself, had the honor of accepting the third-place prize. The associated prize money of €3,000 will be used for the future promotion of pulmonary exercise and memory training.

Our afternoon in Frankfurt was not only a resounding success from the club's perspective, but also filled with many personal and moving stories. We had the opportunity to talk with the first and second place winners over a meal. The second-place winner's project focused on raising awareness about female genital mutilation (FGM). For the club, fostering exchange among affected women and the resulting understanding is a central concern. It is also crucial to discuss such topics more openly and ensure greater dissemination of information. Incredibly, approximately 74,000 women and girls in Germany alone live with the permanent pain associated with FGM. Also present was a student who, as part of her thesis, created a film project that addresses the taboo surrounding FGM. The presentation of this project was incredibly moving and definitely gave us food for thought.

The project of the German Hemophilia Society, presented by Mr. Drebing, was deservedly awarded first place. The society offers a two-week summer camp at Lake Edersee every year for children aged eight to fifteen. The aim is for the children to learn how to administer injections (intravenously) independently, which fosters greater self-confidence and autonomy. Hemophilia is a hereditary clotting disorder that, due to its sex-linked recessive inheritance pattern, predominantly affects males. The importance of medical care for those with this condition was clearly demonstrated to us that day. This makes supporting such a project all the more crucial.

In conclusion, the award ceremony and especially the subsequent discussions were not only very pleasant, but also particularly impressive and moving. Hearing about the work and achievements of other self-help groups makes us even more motivated to look ahead to our future projects.