Virtual information day on September 25, 2021

Alpha1 Germany eV.

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.

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]. September 25th at 10 a.m. Available for free on our YouTube channel.

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. Pulmonary rehabilitation and exercise in alpha-1 antitrypsin deficiency, Ms. Monika Tempel: Energizer and Ms. Michaela Frisch: Outpatient pulmonary rehabilitation during the Corona pandemic (The basics and what to consider) on our channel, so that as many Alphas as possible have access to this information.

Our advisory board members are not only absolute experts, but also wonderful people!

A lot has happened in our Alpha1 family, or in modern parlance, "community," since our last newsletter:

The University of Aachen, under the direction of Prof. Pavel Strnad, has quickly established a Patient Day organized on September 25th in their clinic rooms. Also Dr. Alexander Rupp in Stuttgart With 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.

The video by Prof. Ganschow: When Alpha-1 children need a new liver It'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—and no, you can't do that by lifting a beer mug with one arm 😉

We are now at fourth podcast It'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!

Of course, the topic remains corona This 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).

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 or from Spectrum of Science help.

For the therapeutic use of alpha-1-antitrypsin, a Article from the team around Prof. Dr. Dr. Bals in the ATS Journal Published. The most important sentence from the study is: „The 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.“ Those who prefer listening to reading will find a Interview with Prof. Bals It's also featured in the Apotheken Umschau (pharmacy review). It's also a good way to raise awareness of our condition!

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. In 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.
What 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... Special vaccines for immunocompromised patients could give.

Our recommendation is to consult the doctor after a third vaccine dose to 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 Data from studies This assumption certainly allows for such a conclusion.

We cannot yet say whether it is generally necessary for Alphas to aim for a third vaccination as soon as possible. Prof. Drosten For 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.

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.

However, a brief overview for those who can't wait is already available from  DelveInsight. The results achieved predominantly by the University of Aachen may then be included. Study by Arrowhead not to be missing.

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?

Our answer: Yes! A good example is a survey on the topic of rare diseases, 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.

A very good initiative that draws attention to us is the Action by the Axis with the Ärzte Journal. Here, the focus is placed on us who are rare.

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:

Hopeful donation Ahrtal

„"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!

We promise: Donations will go directly and immediately as emergency aid exclusively to severely affected family members.

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.

Here is the donation account „Hoffnungsspende Ahrtal“
Account holder: Monika Tempel
IBAN: DE92 7505 0000 0027 4261 62
BIC: BYLADEM1RBG
Purpose: Donation of Hope Ahrtal

A heartfelt "thank you" for your support!

Yours sincerely, Monika Tempel