Author
Marion Wilkens, as appeared in Alpha1 Journal 2/2023.
Our YouTube channel is growing; the highlight video from our anniversary celebration is definitely worth watching, and the plasma video is also very interesting and has skyrocketed in views. Practical and everyday resources are, of course, essential for a patient organization. You'll find the three new videos from 2023 at the end of this article.
Externally, it was a very special success that we were allowed to be part of a nationwide campaign „Air and Lungs“, which was launched on September 26, 2023 by Mediaplanet in the nationwide full circulation of the newspaper DIE WELT + E-Paper as an independent special publication.
The clickable PDF is available in the online kiosk Yumpu (at least 450,000 guaranteed impressions). All editorial content and articles can also be found at www.gesunder-koerper.info. In this campaign, Marion Wilkens writes about genetically determined COPD and its possible causes. One of these is – as we all know – alpha-1 antitrypsin deficiency.
A story on TV was particularly moving: that of Şilan, who grew up in a socially disadvantaged neighborhood and set out to become a doctor. It's a touching story with fascinating insights. And the best part: a small part of the documentary was filmed at our patient day in Bad Wildungen, as Şilan is part of the UK Aachen team. The nearly 30-minute WDR program is still available in their media library under the title: "I'm Becoming a Doctor – Made in Marxloh (S03/E03)".
For many years now, we have enjoyed a partnership with the patient library (circulation over 30,000). It's not just a matter of mutually including magazines and brochures; a friendship has developed that allows us to significantly increase our awareness and visibility. For example, in the first issue of 2023, we were able to write the editorial on the topic of "People Talking," publish an article about our planned anniversary and our history, and share patient stories from some of our members.
In the second issue, we reported extensively on the anniversary, and in the third, the 40th issue of Atemwege und Lunge (Respiratory Tract and Lungs), we thanked many stakeholders, including our chairwoman: "Marion Wilkens, Chairwoman of Alpha1 Deutschland e. V., is a virtuoso, tireless networker who repeatedly succeeds in creating a 'we' from individuals and also in raising awareness for neglected topics."„
Furthermore, the article "Identical Symptoms... Different Underlying Diseases" was published, providing important information on when to consider an alpha-1 deficiency. The fourth issue was not yet available at the time of publication, but one thing is certain: Alpha-1 will be included again. Not familiar with the issues yet? No problem, you can find them on our website under Useful Information/COPD.
We're continuing to explore new avenues! As mentioned on page 10, we're now on Instagram. We've published over 65 posts on Facebook, LinkedIn, and Instagram.
Highlights from the Alpha1 YouTube channel
And in November, we are planning our first Facebook Live webinar together with Grifols (see post on the left). The webinar series by CSL Behring (page 37), in cooperation with us and with the active participation of our members, has also been a great success. We have given many presentations about our patient organization and about living with the disease (at patient days, in webinars, at pharmaceutical meetings, and also internationally).
Whatever we do, it's not enough to raise awareness of our condition and find everyone in Germany who lives with or has to live with Alpha-1 Antitrypsin Deficiency. We need you to spread the word and tell your story. Share your story with us. Write down everything that comes to mind. Everyone has a storyteller inside them, and that's the only way we can make our cause known!
