Author
Gabi Niethammer, Alpha1 Deutschland eV, as published in Alpha1 Journal 2/2022.
Dear members,
It's hard to believe: in May 2023 I will have been on the board of Alpha1 Germany for 18 years, initially for many years as secretary and for the last eight years as second chairwoman.
So much has happened in this time, and I've had the privilege of working alongside so many chairpersons: for me, the journey began in 2005 with Elisabeth Takahashi, a lively little woman from Cologne who took the reins after the association's founding in 2001 and held them firmly. Those affected loved her for her excellent advice, while some speakers and pharmaceutical representatives feared her domineering manner. After internal disputes, Gernot Beier took over as chairperson in 2012. Hailing from Melchow, his great strength lay in leading the association with heart and (almost Berlin-style) wit. His primary concern was the well-being of those affected, his fellow board members, and speakers. The association's membership grew steadily, and its focus was on providing thoughtful support to its members. We were all shocked and saddened when Gernot Beier suddenly passed away in 2015, just a few weeks before the annual general meeting. In fact, my original plan had been not to run for re-election; ten years on the board seemed enough. With Gernot's death, everything changed, and I took over the role of second chairperson. The association had by then grown to 500 members, and Marion Wilkens, who lived in Hamburg at the time and now resides in Gernsheim, Hesse, became the new chairperson. She embodies what I consider the ideal chairperson for Alpha1 Germany: a deep understanding of the cause; the ability to connect with everyone in a compassionate and competent manner, whether member, affected individual, medical professional, pharmaceutical company, or national or international politician; great diligence, which we other board members would sometimes gladly curb for the sake of her health; and an incredibly charming personality.
Together with our wonderful colleagues Peter Hübner and Thomas Heimann, we are a truly fantastic four-leaf clover – and yet, it's time for me to go. Almost 20 years ago, I embarked on my Alpha1 journey because my son, then four weeks old, needed my full support as he was affected by ZZ. I felt compelled to learn as much as possible about the disease in order to confront this absolute nightmare. Over the years, the association became almost like a third child to me; I poured my heart and soul into it, raising awareness of the disease, connecting doctors, advocating for action from the pharmaceutical and political sectors, and providing excellent support for our members. I've had countless conversations with many of you, all of them so valuable and enriching. And – no kidding – I felt especially happy all these years when I stood before you on stage, looked into your lovely faces, and had the privilege of moderating a members' meeting or the Alpha1 information day.
18 years… – Just as my son is now an adult and has to make his own experiences regarding his illness, it's time for me to let my third child, who is also now an adult, go a little further and make room for new ideas and approaches. At the same time, I'm creating a void for myself, which I'm sure I'll fill professionally one day, ideally with my strengths in consulting, facilitation, and my love of words and writing. If you have any ideas for me in that regard, I'm all ears.
Three children – and of course, I'm not turning my back on the "smallest" organization, which now has over 900 members. I'm happy to take on an advisory board position, which I will primarily use to continue supporting the children, young people, and their families, and to provide editorial support to the board.
I look forward to seeing you all in Bad Wildungen on May 5th, 2023. Let's celebrate my departure from the board and the beginning of my time as an advisor together.
Your dinosaur
Gabi Niethammer
