Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2019.
Dear readers, Alphas and family members,
The Alpha year 2019 was marked by new achievements and many helpers. Once again, we discovered topics that we still don't address nearly enough. How important is the raw material plasma to us, and is its availability as self-evident as we would like it to be? We have been examining these questions over the past few months (p. 9 ff.).
Thanks to our dedicated members and group leaders, we were present at more events than ever before (p. 37 ff.). Thanks also to all the members who offered their help, such as distributing flyers to doctors and pharmacies in the region or handling the mailing of invitations. This allowed us more time to focus on politics and research.
We must not stop reminding politicians, researchers, and doctors of our needs. Only through our active presence in as many places as possible, highlighting the true needs of Alphas, can we achieve improved quality of life, better individualized therapies, and perhaps even a cure in the long run. All of this serves our stated goals, such as raising awareness of the condition. Even if not all connections are always apparent, ultimately everything we do has one purpose: to make life easier and better for you (and for us) living with Alpha-1 Antitrypsin Deficiency. Therefore, we have chosen "Back to the Roots" as our motto for the coming year. We want to strive to always keep the patient, our members, and ultimately all Alphas at the center of everything we face.
From my personal perspective, this year has been quite stressful, but what exactly is stress? According to the dictionary, it's "increased physical and mental tension." This can sometimes be useful when it comes to getting things done in the short term, but it's not good in the long run. Yes, it's difficult to find the balance between what's manageable and what's simply too much. My life with Alpha-1 is a challenge that looks different every day, every year – but also an opportunity to meet many new people and perhaps enjoy the here and now more.
To truly appreciate the present moment, you need peace and quiet; only then can you see what it has to offer. And sometimes I've forgotten to pause and even notice and enjoy the beautiful things in life.
With that in mind, I'll now pour myself a cup of tea and enjoy continuing to hold the journal in printed form in my hands…
Her
Marion Wilkens
