The 2017 group leader meeting: Informative, friendly, emotional

Storm Xavier couldn't stop us "Alphas": the journey was difficult, with layovers, rebookings, patient waiting, ticket refunds, etc., but on Friday afternoon, we were still able to see many familiar faces from all corners of the country in the lobby of the Nuremberg "Park Inn" hotel. Exactly one year had passed since the last meeting of group leaders in Hanover, and many were looking forward to seeing each other again. Back then, my husband Alexander and I attended for the first time because he wanted to take over the group leadership in Munich. There was no group yet, no experience, no contacts, but a lot of uncertainty and disappointment in the search for like-minded people. Now, we looked back on a good year with our self-help group and wanted to hear from the others how they were doing, how they organized their meetings, what they did to attract new members, and what tricks they used to secure competent speakers for informational events in their groups.

On Saturday, after a hearty breakfast, the meeting started promptly at 9:00 a.m. – not 9:30 a.m., not even an extra glass of wine for the chairwoman could change that. The workday wasn't intended to be a stiff series of presentations, with Marion moderating like a schoolteacher. Instead, it became a forum where everyone could share their experiences from the past year and unburden themselves. A number of similar issues emerged: all the group leaders would welcome more interest from the self-help group members – and newcomers – as some past meetings had been quite small. The difficulties in finding suitable speakers for specialist presentations within the self-help group were also discussed.

The moving account by Andrea Kleinert about her transplant experience was deeply emotional. Long waits, being reassigned, an unexpected deterioration in her health, isolation due to infections after the procedure, minimal contact with the outside world, doubt and hope – she endured it all and is now more energetic and full of life than ever. Fighting back tears, she thanked everyone who made her second chance at life possible. Without pathos or exaggeration, there's no other way to describe this medical miracle. What I find so wonderful about this exchange is its friendly, relaxed, and welcoming atmosphere: you get firsthand information, but it's entirely up to each individual whether they decide for or against a transplant, whether they live a vegan lifestyle or enjoy a juicy steak, whether they actively seek new members or simply support newcomers. Everyone listens to different opinions, gathers suggestions and fresh ideas for their own group's work. As we've known for some time, the disease manifests differently in everyone, and this is something to keep in mind: not every ointment will help you with skin irritations, and not every spray will make it easier for you to breathe. Since all group leaders also represent Alpha1 Germany e.V., it was important at the meeting to discuss and exchange information about the "rules of engagement" regarding pharmaceutical contacts and Facebook presence. Furthermore, our Austrian colleagues Christa and Elfi reported on their group work in Styria and Carinthia, which included many excursions and social gatherings.

And what would the Alphas be without sports? Michaela Frisch from the Espan Clinic, who keeps the Alphas up-to-date on pulmonary exercise and ways to incorporate movement into daily life, spoke this time about rehabilitation for lung patients, what to consider (never use the term "spa treatment" and set clearly defined goals! And when applying, specify the rehabilitation clinic you want to go to, not just the location), how to get the most out of such stays, and what characterizes a good rehabilitation clinic. Traditionally, the program of the self-help group leaders' meetings is complemented by informative bus tours through the host city. The city tour of the Franconian metropolis took us past the city fortifications, the old tollhouse, the uniquely preserved Holy Spirit Hospital, and the Imperial Castle to the Beautiful Fountain. Nearby, after a sightseeing tour, we settled down at the "Bratwurst Röslein." In the world's largest bratwurst restaurant, one could bring the intensive day to a pleasant close with a beer or wine and hearty Franconian specialties. And on the way to the hotel, we saw the market square, also known as the Christkindlesmarkt, which attracts visitors from all over the world to Nuremberg. The "Alphas" were indeed a fast bunch: we were at the Nuremberg Christkindlesmarkt, just eight weeks too early…