Katrin Fell, as appeared in Alpha1 Journal 1/2025.

The Rare Diseases Run 2025 This year's event took place under unusual circumstances. Due to bad weather and its overlap with Carnival season, participation was unfortunately lower than hoped. A total of €41,600 in donations was collected at the event. However, only €400 of this went directly to Alpha1 Germany e.V., demonstrating that there is still considerable potential for future events.

It is particularly regrettable that so few registrations were received specifically for Alpha1 Germany. Therefore, we would like to encourage everyone to actively participate next year. Speak to your local group leaders or organize a run (or walk) with your pulmonary exercise group – together we can achieve so much more! Your employer, your children's school class or sports group, and other groups can also register and receive a discount.

Katrin Fell, as appeared in Alpha1 Journal 2/2024.

As already announced in the last issue of the Alpha1 Journal, you have the opportunity to raise donations for our association from February 24th to March 2nd, 2025.

The RDR is Europe's largest virtual running event for rare diseases, with almost 3,000 participants in 2024. We aim to surpass this fantastic result in 2025 and hope for your participation. You can take part in the run alone or in a group – whether walking, running, in a wheelchair, or with a walker! The only requirement is that the distance covered (500 m, 1 km, 2.5 km, 10 km, 15 km, half marathon, and marathon) is tracked, for example, via a smartwatch or similar device, or by taking a screenshot from your running app. This proof can then be uploaded to the "Running Makes You Happy" website within the specified timeframe.

The run is a virtual run. This means you run on your favorite route at home, on vacation, or wherever you like. This saves you travel costs, protects the environment, and still lets you experience the feeling of competition in a more sustainable world! Via the platform www.rarediseasesrun.net You can register now.

The following packages are available for selection during registration:

The "Online" package (until 05.01.25: €9, until 02.02.25: €10, until 23.02.25: €11) includes:

• Running for a good cause
• Donations already included (€2/Online package, €3/Standard, €4/Shirt and €5/Premium)
• Option to make a voluntary donation up to €100
• Community membership
• Ranking for performance monitoring
• Start number (for printing)
• Certificate (for printing)

The "Standard" package (until 05.01.25: €23, until 02.02.25: €25, until 23.02.25: €27) includes the following in addition to the online package:

• Climate-neutral shipping
• You will receive your race package before the race (except for registrations after 02.02.25)
• Motivational medal

The "Shirt" package (until 05.01.25: €39, until 02.02.25: €40, until 23.02.25: €45) includes the following in addition to the standard package:

• High-quality running shirt

The "Premium" package (until 05.01.25: €53, until 02.02.25: €55, until 23.02.25: €57) includes the following in addition to the shirt package:

• Running shirt and medal in one package at a special price

Optionally, you can make an additional donation of up to €100 when registering, and the organization "Running Makes You Happy" will also donate €0.10 for every kilometer run and recorded to the participating clubs (like ours). All donations go directly to the clubs.

With your participation, you support 33 associations: 5p-minus-Syndrome eV, Alpha1 Germany eV, Angelman eV Germany, Cornelia de Lange Syndrome Working Group eV, CACNA1E International, CDKL5 Germany eV, CRPS Network Together Strong eV, Dravet Syndrome eV, DSCM eV, Dup15q eV, DupMECP2 – Let's Heal MDS, Fett-SOS eV, FOP eV, FOXG1 Germany eV, Friedreich Ataxia Support Association eV, Hand in Hand Against Tay-Sachs and Sandhoff in Germany eV, KAT6A Foundation Austria, Mastocystic Disease Self-Help Network eV, Möbius Syndrome Germany eV, Fabry Disease Self-Help Group eV, MPN Network, NF Children, Niemann-Pick Self-Help Group Germany eV, Noonan Syndrome Switzerland, SCN2A Germany eV, Self-Help EPP eV, Sirius eV, SSADH Deficit eV, STXBP1 eV, Syngap Parents' Aid eV, Tuberous Sclerosis Germany eV, Xia-Gibbs eV and ZNM - Strong together! e.V.

By participating, you automatically donate to all organizations at once, or by specifying "Alpha1 Germany," you donate only to us. If you work for a company that is committed to social responsibility, or if you or your children/grandchildren are members of a running group or a track and field club, for example, then it's also possible to participate in a larger team for Alpha1 Germany e.V. Run for rare diseases – run for Alpha1 Germany, because with every registration and every kilometer run, a donation goes to our association!

Frieda Wilkens, as appeared in Alpha1 Journal 2/2024.

Besides providing fundamental and essential knowledge about Alpha-1 Antitrypsin Deficiency, networking among affected individuals is of paramount importance to us as an association. However, since our Alpha1 members are scattered throughout Germany, personal exchange on disease-related topics is sometimes quite challenging. The pandemic has shown us that platforms like Zoom or Teams can create a forum to facilitate this exchange despite geographical distance. The importance of such options is evident in the high demand for the pulmonary exercise classes with Peddar (Peter Kukry). Free classes are offered every Friday for Alpha1 members to help incorporate more movement into their daily routines. I probably don't need to explain how crucial sufficient daily exercise and proper breathing are, especially for those with Alpha-1 Antitrypsin Deficiency. Furthermore, the class offers the opportunity to meet others in similar situations and share the joy of exercise. With the additional offering of memory training on Tuesday evenings, you'll also stay mentally sharp, a skill that is far too often underestimated.

Because we, as an association, want to continue offering you the opportunity for such training and are convinced of its importance, we applied for the 2024 sponsorship award from the Pharmaceutical Companies of Hesse/Rhineland-Palatinate/Saarland (Pharmaceutical Companies Hessen/Rhineland-Palatinate/Saarland e.V.). The Pharmaceutical Companies Fund awards an annual prize for volunteer work and self-help initiatives. This year's competition focused on the theme of "Helping People Help Themselves," which prompted us to submit our "Fit in Body and Mind" project. As a result, we were invited to the award ceremony on November 4, 2024, at the VCI House (German Chemical Industry Association) in Frankfurt am Main. Peddar and Marion Wilkens, accompanied by Jutta Stewart and myself, had the honor of accepting the third-place prize. The associated prize money of €3,000 will be used for the future promotion of pulmonary exercise and memory training.

Our afternoon in Frankfurt was not only a resounding success from the club's perspective, but also filled with many personal and moving stories. We had the opportunity to talk with the first and second place winners over a meal. The second-place winner's project focused on raising awareness about female genital mutilation (FGM). For the club, fostering exchange among affected women and the resulting understanding is a central concern. It is also crucial to discuss such topics more openly and ensure greater dissemination of information. Incredibly, approximately 74,000 women and girls in Germany alone live with the permanent pain associated with FGM. Also present was a student who, as part of her thesis, created a film project that addresses the taboo surrounding FGM. The presentation of this project was incredibly moving and definitely gave us food for thought.

The project of the German Hemophilia Society, presented by Mr. Drebing, was deservedly awarded first place. The society offers a two-week summer camp at Lake Edersee every year for children aged eight to fifteen. The aim is for the children to learn how to administer injections (intravenously) independently, which fosters greater self-confidence and autonomy. Hemophilia is a hereditary clotting disorder that, due to its sex-linked recessive inheritance pattern, predominantly affects males. The importance of medical care for those with this condition was clearly demonstrated to us that day. This makes supporting such a project all the more crucial.

In conclusion, the award ceremony and especially the subsequent discussions were not only very pleasant, but also particularly impressive and moving. Hearing about the work and achievements of other self-help groups makes us even more motivated to look ahead to our future projects.

Katrin Fell, as appeared in Alpha1 Journal 1/2024.

We are delighted to have become part of the "Running Makes You Happy" community and to participate in the "Rare Disease Run" (RDR) next year. Our primary focus is, of course, raising awareness of rare diseases and, incidentally, generating donations for our association. This brings us another step closer to our goal of attracting more independent donations.

The great thing is: everyone can participate, whether running, walking, in a wheelchair – anything is possible if you have registered.

What distances are available?

500 m, 1 km, 2.5 km, 5 km, 10 km, 15 km, half marathon and marathon. All distances can be walked or run.

The run takes place every year in the last week of February or the first week of March. During this time, you can run anytime, anywhere. The more registrations Alpha1 Germany e.V. receives, the more donations we get. This year, almost €40,000 was distributed to the participating organizations.

How much does the run cost me?

In 2023, fees ranged from €10 to €53, depending on the package (e.g., whether it included a T-shirt). You can also add a voluntary donation of up to €100 when you register. All donations go directly to the organizations.

Each participant will receive a certificate, and we will be happy to report on the winners.

You can find more information here. So register as soon as possible and compete for Alpha1 Germany!

Miriam Butke

That should be the motto of the four men from the pretty border town of Gronau in Münsterland. How else would they come up with the crazy idea of walking 130 km in one go? With short breaks, sure, but all through the night. On foot! I've heard it wasn't a crazy idea at all, but rather arose from a beer-fueled whim. Ingo Hoff and Robert Büscher love a challenge and have pushed themselves to their limits, and even a little beyond, before. On top of that, the two have huge hearts and it seemed like the right time for them to do something good again. Marcus Hagemann and Dirk Hallekamp thought the idea was fantastic and joined them.

The result was the so-called "State Parliament Run". Start: State Parliament in Düsseldorf, Finish: the rock'n pop Museum in Gronau, Distance: 130 km, Time limit: maximum 30 hours.

What can I say? They did it! I was there live at the finish line and got to celebrate the four men and their incredible achievement. And let me tell you, their shoes and feet looked awful. The men were exhausted but also happy to have conquered the challenge and are proud of the amount of money raised. Half of the total €18,500 (!) went to the charity Lichtblicke eV, and the other half was accepted by Gabi Niethammer, representing Alpha1 Deutschland eV.

Conclusion: A fantastic campaign with a huge amount of donations! I'm already curious to see what they come up with next.

Masks for a good cause

Gabi Niethammer, 2nd Chairwoman Alpha1 Germany eV.

We are all aware of the high demands placed on us during this strange time of the coronavirus pandemic. Social distancing rules must be observed, and one almost never leaves the house without a mask.

In recent weeks, many people have bought masks from various places, and some have even gone to the trouble of sewing them themselves (often with the help of YouTube videos). I also tried my hand at sewing and, after many tiring hours, was happy to have managed to make five usable masks.

The Lüdemann family – you know our board member Ronald – used the mask mandate as an opportunity for a wonderful initiative: Why not sew masks for the employees of the company where father Ronny works? No sooner said than done! Marleen Lüdemann (14), together with her mother Simone, sewed 250 colorful fabric masks within a week, which they then donated to the Steinbrecher company. As a thank you, they received a check for €1,250 for Alpha1 Germany. We sincerely thank the two diligent seamstresses for their tireless efforts and also extend our heartfelt thanks to the Steinbrecher company for their generous donation.

Besides knowing about the countless hours spent at the sewing machine, I am particularly impressed by the creativity with which the family considered how a donation for Alpha1 Germany could be generated.

But perhaps the Lüdemanns aren't the only ones, and you also have good ideas for raising funds? Do good and let us Alphas be a part of the fundraising process, because we're all happy when you tell us about it and the Alpha1 Germany donation account grows.