{"id":2158,"date":"2017-11-13T12:36:06","date_gmt":"2017-11-13T11:36:06","guid":{"rendered":"http:\/\/www.alpha1-deutschland.org\/?p=2158"},"modified":"2020-03-10T14:59:39","modified_gmt":"2020-03-10T13:59:39","slug":"gruppenleitertreffen-2017-in-nuernberg","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/gruppenleitertreffen-2017-in-nuernberg","title":{"rendered":"Group Leader Meeting 2017 in Nuremberg"},"content":{"rendered":"<div id=\"fws_6a8effcdd09e0\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"3%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.03); padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<h1><span style=\"color: #004267;\">The 2017 group leader meeting: Informative, friendly, emotional<\/span><\/h1>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 50px;\" class=\"divider\"><\/div><\/div><div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div id=\"cmsms_row_5e66229b00f9e\" class=\"cmsms_row cmsms_color_scheme_default\">\n<div class=\"cmsms_row_outer_parent\">\n<div class=\"cmsms_row_outer\">\n<div class=\"cmsms_row_inner\">\n<div class=\"cmsms_row_margin cmsms_11\">\n<div class=\"cmsms_column one_first\">\n<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p><strong>Irina Niepel<\/strong>, as published in Alpha1 Journal 2\/2017<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>Storm Xavier couldn&#039;t stop us &quot;Alphas&quot;: 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 &quot;Park Inn&quot; 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.<\/p>\n<p>On Saturday, after a hearty breakfast, the meeting started promptly at 9:00 a.m. \u2013 not 9:30 a.m., not even an extra glass of wine for the chairwoman could change that. The workday wasn&#039;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 \u2013 and newcomers \u2013 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.<\/p>\n<p>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 \u2013 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&#039;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&#039;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&#039;s work. As we&#039;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 &quot;rules of engagement&quot; 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.<\/p>\n<p>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 &quot;spa treatment&quot; 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&#039; 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 &quot;Bratwurst R\u00f6slein.&quot; In the world&#039;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 &quot;Alphas&quot; were indeed a fast bunch: we were at the Nuremberg Christkindlesmarkt, just eight weeks too early\u2026<\/p>\n<\/div>\n\n\n\n<div id=\"fws_6a8effcdd202f\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"\"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-2 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-8 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t<div class=\"nectar_cascading_images\" data-border-radius=\"none\" data-parallax=\"\" data-parallax-intensity=\"subtle\" data-animation-timing=\"175\"><div class=\"cascading-image\" data-has-img=\"false\" style=\" padding:8%;\" data-max-width=\"100%\" data-max-width-mobile=\"100%\" data-animation=\"fade-in\" data-shadow=\"none\"><div class=\"inner-wrap\"><div class=\"bg-layer\" data-scale=\"1\" style=\"transform: scale(1)\"><div class=\"bg-color\" style=\" -webkit-transform:translateX(0%) translateY(0%) ; -ms-transform:translateX(0%) translateY(0%) ; transform: translateX(0%) translateY(0%) ; background-color: #004267;\" data-has-bg-color=\"true\"><\/div><\/div><\/div><\/div><div class=\"cascading-image\" data-has-img=\"true\" style=\" padding:8%;\" data-max-width=\"100%\" data-max-width-mobile=\"100%\" data-animation=\"fade-in\" data-shadow=\"none\"><div class=\"inner-wrap\"><div class=\"bg-layer\" data-scale=\"1\" style=\"transform: scale(1)\"><div style=\" -webkit-transform:translateX(10%) translateY(10%) ; transform:translateX(10%) translateY(10%) ;\" class=\"img-wrap\"> <img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/N\u00fcrnberg.jpg\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/N\u00fcrnberg.jpg 563w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/N\u00fcrnberg-300x202.jpg 300w\" sizes=\"auto, (min-width: 1000px) 55vw, 100vw\" height=\"379\" width=\"563\" class=\"skip-lazy\" alt=\"\" \/> <\/div><\/div><\/div><\/div><\/div>\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-2 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Das Gruppenleitertreffen 2017: Informativ, famili\u00e4r-freundlich, emotional AutorIn Irina Niepel, so erschienen im\u00a0Alpha1-Journal 2\/2017 Der Sturm Xavier konnte uns \u201eAlphas\u201c nicht aufhalten: die Anreise gestaltete sich schwierig, mit Umsteigen, Umbuchen und...","protected":false},"author":1,"featured_media":3635,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24,29],"tags":[],"class_list":["post-2158","post","type-post","status-publish","format-standard","has-post-thumbnail","category-alpha1-journal","category-gruppenleitertreffen"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - 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