{"id":4670,"date":"2021-09-17T10:58:30","date_gmt":"2021-09-17T08:58:30","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?p=4670"},"modified":"2024-02-22T15:51:26","modified_gmt":"2024-02-22T14:51:26","slug":"05-2021-virtueller-infotag-am-25-09-2021","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/05-2021-virtueller-infotag-am-25-09-2021","title":{"rendered":"05\/2021: Virtual information day on September 25, 2021"},"content":{"rendered":"
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Virtual information day on September 25, 2021<\/span><\/h1>\n<\/div>\n\n\n\n
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Author<\/h4><\/span><\/span>\n<\/div>\n
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Alpha1 Germany eV.<\/b><\/p>\n<\/div>\n\n\n\n

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We almost met again on September 24th, and on September 25th we could have learned a lot more about Alpha1, exchanged ideas about current topics at our joint celebration, and simply spent a nice time together.<\/p>\n

Even though the anniversary celebration is postponed, we will still provide the information: We have asked three advisory board members to give us a video preview of the upcoming information day and anniversary celebration, and we will be posting these videos as an online event on Saturday, the [date missing].\u00a0September 25th at 10 a.m.<\/strong>\u00a0Available for free on our YouTube channel.<\/p>\n

It's worth listening in; our greeting will only be available on this special weekend. Afterwards, the lectures by Prof. Dr. Rembert Koczulla will remain available.\u00a0Pulmonary rehabilitation and exercise in alpha-1 antitrypsin deficiency<\/strong>, Ms. Monika Tempel:\u00a0Energizer\u00a0<\/strong>and Ms. Michaela Frisch:\u00a0Outpatient pulmonary rehabilitation during the Corona pandemic<\/strong>\u00a0(The basics and what to consider) on our channel, so that as many Alphas as possible have access to this information.<\/p>\n

Our advisory board members are not only absolute experts, but also wonderful people!<\/p>\n<\/div>\n\n\n\n

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A lot has happened in our Alpha1 family, or in modern parlance, "community," since our last newsletter:<\/h2>\n<\/div>\n\n\n\n
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The University of Aachen, under the direction of Prof. Pavel Strnad, has quickly established a\u00a0Patient Day<\/a>\u00a0organized on September 25th in their clinic rooms. Also\u00a0Dr. Alexander Rupp in Stuttgart<\/a>\u00a0With the support of our Stuttgart region self-help group, we invite you to an Alpha1 Patient Day on October 9th. Details can be found on our website.<\/p>\n

The video by Prof. Ganschow:\u00a0When Alpha-1 children need a new liver<\/a>\u00a0It's now published, and Ms. Tempel has also finalized the family member version of "Alpha1 and the Psyche." There are new exercises from Peter Kukry; he shows us, for example, how to train the upper shoulder muscles\u2014and no, you can't do that by lifting a beer mug with one arm \ud83d\ude09<\/p>\n

We are now at\u00a0fourth podcast<\/a>\u00a0It's arrived! In the third podcast, Ms. Tempel helps us cope better with our illness, and it's fascinating when Mr. Heimann (board member at Alpha1) talks about his self-therapy at home in the fourth podcast. Have a listen!<\/p>\n

Of course, the topic remains\u00a0corona<\/strong>\u00a0This is particularly relevant for us right now, because even though most of us are fully vaccinated, many questions remain: Since May 28th, the vaccine from the German manufacturer BioNTech and its US partner Pfizer has been approved by the European Medicines Agency (EMA) for children and adolescents aged twelve and older. Since August 16th, the Standing Committee on Vaccination (STIKO) has also recommended vaccination for adolescents (aged 12 and older).<\/p>\n

No one can make this decision for the parents. A tip from us: discuss the question of whether or not to vaccinate with your teenager and make the decision together. Try to outline the pros and cons, especially if your teenager's response is "I don't know." The following might help you prepare: Article in the Pharmaceutical Journal<\/a>\u00a0or from\u00a0Spectrum of Science<\/a>\u00a0help.<\/p>\n

For the therapeutic use of alpha-1-antitrypsin, a\u00a0Article from the team around Prof. Dr. Dr. Bals in the ATS Journal<\/a>\u00a0Published. The most important sentence from the study is: \u201eThe most important finding of this work is that AAT is a candidate for the treatment of COVID-19. Evidence from this work and from the literature shows that AAT has antiviral and anti-inflammatory effects.\u201c Those who prefer listening to reading will find a\u00a0Interview with Prof. Bals<\/a>\u00a0It's also featured in the Apotheken Umschau (pharmacy review). It's also a good way to raise awareness of our condition!<\/p>\n

The coronavirus situation is particularly difficult for our transplant recipients, because even after a second dose of the vaccine, organ transplant holders are not necessarily protected. This is because vaccinations have only a limited effect on patients who have to take immunosuppressant drugs permanently after organ transplants.\u00a0In a cohort of US patients, even after the second dose of an mRNA vaccine, only about half of the patients showed an increase in antibodies against SARS-CoV-2.<\/a>
\nWhat this ultimately means, our scientists don't know; perhaps there is some protection after all, perhaps not, but surely no one wants to find out. Fortunately, research continues in this area to determine whether...\u00a0Special vaccines for immunocompromised patients<\/a>\u00a0could give.<\/p>\n

Our recommendation is to consult the doctor after\u00a0a third vaccine dose<\/a>\u00a0to ask. This also applies to all Alphas who received both vaccinations with a vector vaccine. Ask if it makes sense to administer an mRNA vaccine afterwards, which\u00a0Data from studies<\/a>\u00a0This assumption certainly allows for such a conclusion.<\/p>\n

We cannot yet say whether it is generally necessary for Alphas to aim for a third vaccination as soon as possible.\u00a0Prof. Drosten<\/a>\u00a0For example, one expert believes that most people are still well protected and that there is still too little data to recommend a third vaccination. We have asked our Alpha1 experts and are now waiting for their answer, which we will gladly forward to you in our next newsletter.<\/p>\n

In our last newsletter, we announced an update on Alpha-1 research; however, we are postponing this until a later date, as results from our liver research will be published shortly, and we will then cover the topic "What's new in AATM research" in detail.<\/p>\n

However, a brief overview for those who can't wait is already available from\u00a0\u00a0DelveInsight.<\/a>\u00a0The results achieved predominantly by the University of Aachen may then be included.\u00a0Study by Arrowhead<\/a>\u00a0not to be missing.<\/p>\n<\/div>\n\n\n\n

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Why should we even participate in surveys? What's in it for us? There are so many of them right now, is it really worth it?<\/h2>\n<\/div>\n\n\n\n
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Our answer:\u00a0Yes!<\/strong>\u00a0A good example is\u00a0a survey on the topic of rare diseases<\/a>, which many of us have experienced. This shows that many patients want newborn screening and don't believe in a cure in the near future. But only if we articulate loudly enough what we think and what we want will we be heard and research will be directed towards our wishes, because everything ultimately revolves around us, the patients. We sometimes forget this, and if we don't constantly point it out, others (doctors, researchers, and politicians) will forget it too.<\/p>\n

A very good initiative that draws attention to us is the\u00a0Action by the Axis with the \u00c4rzte Journal<\/a>. Here, the focus is placed on us who are rare.<\/p>\n

And the contribution by Prof. Vogelmeier is outstanding, because\u00a0Not every instance of shortness of breath experienced by a smoker is COPD.<\/a>.<\/div>\n<\/div>\n\n\n\n
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While we usually end with something positive and nice, like a tip or a recipe, today we would like to give you something completely different:<\/p>\n

Hopeful donation Ahrtal<\/h2>\n

\u201e"Hope Donation Ahrtal" is a private initiative by people born and raised in the Ahr Valley. The flood disaster is not abstract for us. It has affected people with whom we share memories of places and encounters. We celebrated and laughed at family gatherings. Now the homes and livelihoods of our relatives are destroyed, and some of them have perished in the flood. So that hope is not swept away as well, we are sending a concrete message of solidarity: You are not forgotten!<\/p>\n

We promise: Donations will go directly and immediately as emergency aid exclusively to severely affected family members.<\/p>\n

We are currently collecting donations for an elderly aunt whose apartment and household goods have been devastated, and for the bereaved families of 4 flood victims.<\/p>\n

Here is the donation account \u201eHoffnungsspende Ahrtal\u201c
\nAccount holder: Monika Tempel
\nIBAN: DE92 7505 0000 0027 4261 62
\nBIC: BYLADEM1RBG
\nPurpose: Donation of Hope Ahrtal<\/p>\n

A heartfelt "thank you" for your support!<\/p>\n

Yours sincerely, Monika Tempel<\/p>\n<\/div>\n\n\n\n

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Save the date: April 29th\/30th!<\/h2>\n

Hope is a good keyword for our last topic: We on the board are already working on a new venue and will do everything we can to celebrate 20 years of Alpha1 Germany together \u2013 no matter when!!! Save the date: April 29th\/30th and check our website regularly.<\/p>\n

Until then, train hard for the "dance in honor" and the "information marathon".<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Virtueller Infotag am 25.09.2021 AutorIn Alpha1 Deutschland e.V. Am 24. September h\u00e4tten wir uns beinahe wiedergesehen, am 25. September h\u00e4tten wir wieder viel \u00fcber Alpha1 lernen k\u00f6nnen und uns beim...","protected":false},"author":1,"featured_media":4675,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,21],"tags":[],"class_list":["post-4670","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-newsletter"],"yoast_head":"\n05\/2021: Virtueller Infotag am 25.09.2021 - Ihr Online Portal f\u00fcr Mitglieder und Interessierte<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alpha1-deutschland.org\/en\/05-2021-virtueller-infotag-am-25-09-2021\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"05\/2021: Virtueller Infotag am 25.09.2021 - Ihr Online Portal f\u00fcr Mitglieder und Interessierte\" \/>\n<meta property=\"og:url\" content=\"https:\/\/alpha1-deutschland.org\/en\/05-2021-virtueller-infotag-am-25-09-2021\/\" \/>\n<meta property=\"og:site_name\" content=\"Ihr Online Portal f\u00fcr Mitglieder und Interessierte\" \/>\n<meta property=\"article:published_time\" content=\"2021-09-17T08:58:30+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-02-22T14:51:26+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Referenten-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"7 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021\"},\"author\":{\"name\":\"Redaktion Alpha1 Deutschland e.V.\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/#\\\/schema\\\/person\\\/bbeaebe048b6117849fb55f50616d631\"},\"headline\":\"05\\\/2021: Virtueller Infotag am 25.09.2021\",\"datePublished\":\"2021-09-17T08:58:30+00:00\",\"dateModified\":\"2024-02-22T14:51:26+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021\"},\"wordCount\":1802,\"image\":{\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/alpha1-deutschland.org\\\/wp-content\\\/uploads\\\/Referenten-1.jpg\",\"articleSection\":[\"Allgemein\",\"Newsletter\"],\"inLanguage\":\"en-GB\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021\",\"url\":\"https:\\\/\\\/alpha1-deutschland.org\\\/05-2021-virtueller-infotag-am-25-09-2021\",\"name\":\"05\\\/2021: Virtueller Infotag am 25.09.2021 - 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