Marion Wilkens, as appeared in Alpha1 Journal 1/2025.

Everyone can – and should – contribute to ensuring that this valuable work can continue.

Dear readers, dear companions, dear Alphas,

The care and support of patients with alpha-1 antitrypsin deficiency depends not only on medical progress but also on the commitment of society – both in terms of ideas and finances. Securing donations and grants, in particular, is increasingly posing significant challenges for us.

Compared to other countries, the legal and ethical requirements for financing by the pharmaceutical industry are significantly stricter in Germany – a principle that we generally welcome.

For us as a patient organization, independence from industry and maximum transparency are not an option, but a matter of course.

At the same time, this path demands a great deal of commitment, creativity, and perseverance – especially when public and private donations are difficult to secure. For example, at the time of writing, we hadn't even received confirmation of whether – and if so, how much – public funding we would receive. The funding is for 2025, not 2026!

We are all the more grateful to everyone who supports us with great dedication despite these circumstances: committed donors, doctors who contribute their time, expertise and heart, as well as numerous supporters who are committed to Alpha-1.

This year we have sufficient funds (including from reserves) to complete all projects already underway. However, we would like to point out that we will need to rethink our approach in the coming years. Everyone can – and should – contribute to ensuring that this valuable work can continue.

Since the last journal, there's been a lot of positive news to report: informative events (reports from our information day in Bad Wildungen), new scientific projects just getting underway, and important findings that are paving the way for better therapies. This issue is also rounded out with reports from self-help groups, a reader's letter, an introduction to a supporter, and much more.

Thank you for being on our side.

Sincerely, Marion Wilkens

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2024.

A look back – A year full of commitment and community

Dear readers,

The year is drawing to a close, and it's time to look back together on the past months. For our patient organization, it has been a year full of challenges, but also full of precious moments that have shown us how strong our community is.

We have launched important projects that benefit our members and all those affected. From educational initiatives and events to new projects for improved care – every step has been driven by the goal of putting your needs first. We are particularly proud of the numerous opportunities we have created to connect with you, whether at our many patient days, virtual meetings, or in personal conversations (see page 14).

Together with our advisory board member Nicole Scherhag and the group leaders, we have developed the "Rehabilitation" project, among other things. The result is a guide that will be available to you shortly. We have also prepared new videos (Expectoration, page 13) and podcasts (Haema, page 22) for a cozy winter evening.

Beyond all the activities, it was particularly moving for us to see how much cohesion and solidarity exists in our community. Your stories, your experiences, and your commitment have inspired and motivated us to give our best every day.

We have ambitious plans for the coming year: new projects, increased awareness, and even stronger networking to further advance the concerns of all those affected. We look forward to embarking on this journey together with you. The motto for the coming year is: Yes to health – yes to better care – yes to Alpha1 Germany e.V.

When it comes to health, the word "exercise" often comes up. Are you one of those people who start the year with good intentions, perhaps to get more exercise? Then be sure to join us for the Rare Disease Run (page 11). You don't have to jog; let others run and simply choose a walking route for yourself. That's what I'll do, and I'm happy to be doing something good for our patient organization in such an uncomplicated and healthy way...

I wish you and your families a good start to the new year and above all health, confidence and many beautiful moments.

Yours sincerely, Marion Wilkens

Marion Wilkens, Chairwoman of Alpha1 Germany eV, as appeared in Alpha1 Journal 1/2024.

In your hands you hold our summer journal, this time very late, just like summer itself.

Just like the weather, the club's activities had their ups and downs. Ultimately, thankfully, the past year was characterized by many wonderful moments.

The events, some of which you can read about here, were filled with many heartwarming encounters, and we grow closer every year. Especially after our information day, we inevitably ask ourselves: What is it that we need? Is it the wealth of information about our illness and living with it, or is it perhaps more the sense of community, the feeling of not being alone with our problems, the supportive network that helps us all, or simply the wonderful connections we've made?

You might be wondering where the "downs" in my list of ups and downs were? Quite simply: there are too many great projects, too many stories to tell, too much news we want to report. One significant down is the increasing difficulty of maintaining our budget – raising it takes considerably more work than when I first started on the board.

As I write these lines, our membership has grown to 1066 – a substantial and encouraging number! We need to find new ways to preserve what's good while still having time for new projects, studies, and events. And you'll read in several places in the journal that we also need more financial support from each and every one of you, without creating barriers to participation and involvement.

You learn something new every day, sometimes I think it just can't all fit into my head. Oh well, if it doesn't fit in my head anymore, then it just sits on my desk!

I wish us all a pleasant (and peaceful) summer, good health, and if you ever have any spare cash, please think of us. We not only appreciate your financial support, but we also welcome your thoughts and suggestions…

Her

Marion Wilkens

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2023.

Dear Alphas, dear family members and dear Alpha1 enthusiasts,

There's already something else to celebrate, barely after the anniversary festivities have ended. We've achieved one of our goals:
The association has 1,000 members! That's 1,000 strong voices, 1,000 helpers in spreading information, and 1,000 hearts beating for Alpha1 Germany, because the association is us, all of us!
According to one commonly used classification, companies with ten to 499 employees are considered medium-sized – our organization already has 1,000 people working on alpha-1 antitrypsin deficiency. Okay, the second classification is based on annual revenue, and we definitely need to work on that.

Sometimes it really does feel like we're a company with all the trimmings: legal, marketing, and finance departments, accounting and administration, basic research and product development, management, and various committees. We have all of that, too; it's just called something different. You'll find our terminology throughout the many pages of our journal; for example, we call our Treasurer (page 48), Social-
Media Helper (page 10), Hotline Voice (page 10), Member Data Administrator, European Representative, or simply Board of Directors and Advisory Board (found everywhere). It's not just in the terminology that we differ significantly from a company – even if that's sometimes forgotten – we are all volunteers and dedicated to our work.
We manage everything alongside our jobs, families, households, and personal lives. We always give our best, but sometimes we simply can't do any more. Our journal accurately reflects our experiences, what we initiate, and what we accomplish within our patient organization.

Enjoy reading and please be patient if something doesn't happen immediately. We all can.
We proudly conclude the year and look back with satisfaction – although, of course, planning for 2024 is already underway (page 11), and we look forward to seeing you at one or more events. Have a wonderful start to the new year, stay healthy and active.

Her
PS: Why not send someone some New Year's greetings using the enclosed postcard?.

Marion Wilkens, Chairwoman of Alpha 1 Germany eV, as appeared in Alpha1 Journal 1/2023.

Dear Alphas, dear family members and dear Alpha1 enthusiasts,

Dear Alphas, dear family members, and dear Alpha1 enthusiasts, we worked towards this for a long time, planned it, and even booked a venue in Kassel, but we had to cancel it again. The pandemic and its unpredictable consequences made it difficult for us to finally hold our anniversary event. Now we've finally made it happen: a 20+2 anniversary celebration full of joyful reunions, full of emotions, and – something easily forgotten – full of hard work, especially in the weeks leading up to it.

Thanks to an excellent board team, the help of Katrin and the many understanding members when things took longer than expected, this celebration was possible.

I don't know how many times I've watched the anniversary video now; it shows what we are: a great association with active members, a well-connected patient organization with advisory boards and doctors who go far beyond the call of duty for us, and a very special, warm-hearted group of Alpha-1 patients and Alpha-1 friends!

I am grateful to be part of this network, well informed and, above all, well looked after and supported.

Unfortunately, there aren't only reasons to celebrate; our condition is serious, and we still have a lot to achieve. We need optimal care, personalized treatment, a dedicated Alpha-1 guideline, access to everything that benefits us, and informed doctors everywhere, not just in large centers. We should see digitalization as an opportunity and a way to be diagnosed earlier and receive the best possible treatment. All of this requires effort, and we are delighted to see that more and more people with Alpha-1 are willing to get involved and stand with us.

I'm optimistic about the future; we've already achieved a great deal and will continue to push forward. We'll be reporting on our progress at the already planned information day in 2024 and at many other events. And I'll be there for the next anniversary, whenever we celebrate it—will you?

Take care of yourself

Her

Marion Wilkens

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2022.

Dear Alphas, dear family members and dear Alpha1 enthusiasts,

This year, texts and presentations have often spoken of new paths. We, too, have repeatedly used these words, because after the pandemic we need a fresh start, if not a complete new beginning.

New paths, such as those Professor Ganschow intends to pursue with the children's registry (p. 37) and those Dr. Trudzinski envisions in gender medicine (p. 34). We are also exploring new Alpha1-specific avenues with the joint development of PROMs (patient-related outcome measures) (p. 33) and, last but not least, with the attempt to establish a European network (p. 24).

My dear fellow board member Gabi Niethammer is also looking for new ways, because her children (including the club's baby Alpha1) are now grown up (p. 13).

It wasn't a surprise to us, and we had already discussed it frequently. Daring to try new things while preserving what has proven successful, Ms. Niethammer is moving from the board of directors to the advisory board, where she will continue to support us as a long-standing member and family contact person with her irreplaceable experience and kind words. When I was recently ill and had to proofread texts – which was very tiring for me – Ms. Niethammer simply read them aloud and sent them to me via message, so I could listen to them and make corrections whenever my energy allowed. Sending personal podcasts is just one of Ms. Niethammer's many wonderful qualities.

Incidentally, these were the texts you are holding in your hands today.

Hopefully we will all see each other from May 5th to 7th in Bad Wildungen (p. 11) and until then, have a good winter, stay away from all viruses and bacteria and have a wonderful Christmas.

Her

Marion Wilkens

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2022.

Dear Alphas, dear family members and dear Alpha1 enthusiasts,

„"Start – Stop – Continue" is the title of this year's workshop at our group leader conferences. It could also be my own personal motto, and perhaps you'll consider it as a theme for your own work.

After a long period of hiding and caution, we've missed out on a lot and forgotten many things. What I miss most is spontaneity—simply visiting someone, taking a trip, or just popping into a restaurant. Although I shouldn't really call it deprivation, because the extra pounds on the scale show that a little more restraint would have been good in some areas. Things I should STOP doing come to mind very quickly. I don't think I need to tell most people what I'm talking about. STARTING is more difficult: How about more exercise, simply enjoying the good weather, going for walks, swimming in the lake? Spontaneously doing everything you can do outdoors, because the risk of infection is so low there. But somehow, the pandemic has made me forget how to do that; I feel rather lethargic. It's fortunate that Ms. Tempel writes about physical activity and also about our avoidance strategies on page 18.

I've already discovered a trick to outsmart myself. When I'm in a particularly active phase, I fill my calendar with appointments, dates, and fun ideas – and what's in the calendar gets done, and appointments are kept. This gradually brings my daily activity level back, and I'm even scheduling workouts in my calendar now. You can read why this is important on page 28, and also why doing things together is simply more fun.

We should continue with the protective measures that we have all clearly internalized. Wearing a mask whenever many people gather, washing our hands frequently, and getting vaccinated. Personally, I find it easy to think about continuing: I want to keep working towards a better everyday life with this illness – not only for you, but especially for myself – and that's why I'm going into the garden now to get some exercise. I hope you find some good ideas for your daily life.

Her

Marion Wilkens

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2021.

Dear Alphas, dear family members and dear Alpha1 enthusiasts, or simply put: dear readers,

But nothing is easy right now: planning an anniversary, canceling an anniversary, planning and canceling group leader meetings – not just the wasted time, but the passion that goes into it, that makes it so difficult.
Even without event preparations, we're all extremely busy, as many are working from home and have time to think about projects that Alpha1 Germany can/should/may participate in. But we're not complaining; it's great that a pandemic brings us much closer together. When your conversation partner is wearing a comfy sweater instead of a suit, the conversation simply flows more easily.

But no, I swear, I've never conducted a conference in my pajamas! Visiting colleagues in America or Europe now only takes an hour, not a day's travel. Not to mention the financial benefits and the improved carbon footprint. And yet, I miss seeing you all in person, not in the virtual world.

I believe in science and research; they will find a solution for COVID-19 and one day for Alpha-1 as well. Read about some new research findings in this issue, as well as the results of wonderful new and existing collaborations (page 22 about James Lind Care, page 11 about the new youth flyer, and page 12 about news from Aachen).

Despite all the adversity, we have grown much closer together and look forward to an exciting year 2022 together on the board, with our advisory boards, with our scientific advisory boards, with the self-help groups, with the Alpha-1 centers, the Respiratory League, the pharmaceutical companies that support us and the many people with whom it is simply fun to work!

Thank you all and I wish you a wonderful start to 2022!

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2021.

Alphas,

We created this year's journal with great confidence and, above all, great anticipation. What makes us confident? Besides summery temperatures, declining COVID-19 case numbers, and the possibility of meeting with people again, it's the prospect of our anniversary celebration.

It's not just the special information day with Prof. Vogelmeier and our fantastic scientific advisors as speakers (see page 10); it's the whole year—a special year. Even now, in preparation, we're leafing through historical documents and looking back at what the association has already achieved. On other days, we're looking to the future, considering what new paths we might want to take, and making plans.

This organization is something truly special, at least that's how I feel. Alphas are something truly special, and I'm incredibly excited to see many of you again this year. And if you don't want to, can't, or aren't allowed to go out in person, we'll bring the events to you to some extent (via YouTube, podcasts, and journals).

We, the board of Alpha1 Germany, see many tasks ahead and look forward to them. The pandemic has once again demonstrated that everything is constantly changing, and we all want to move with the times. Our videos and podcasts are good examples of this. We are excited to see what the next few years will bring for the organization.

But back to the journal you're holding. You won't find much in the "documented for you" section this time, as there were no live lectures in the first half of the year. However, there were many excellent lectures online, and these are much easier to absorb than to transcribe. Have you visited our YouTube channel? Here you'll find our documentaries and scientific lectures from the first half of 2021 (see page 12). And by the way – just a click away from the lectures, you'll find exercises with Peter Kukry. We've compiled quite a collection of exercises, and even if you don't participate yourself, watching the videos will at least give your mouse hand a workout.

But now, let's browse and read. Enjoy!
Her

Marion Wilkens