Peter Hübner, treasurer of Alpha1 Germany eV, as published in Alpha1 Journal 1/2025.

Dear members,

Dear readers, the topic of finance is and remains a difficult one, but I'd like to start with the good news: Our patient organization's work is financially secured for 2025. The major sponsorship funds for 2025 have already been received. Regarding the lump-sum funding at the federal level, information about the funding and its amount is still pending. This situation makes self-help work with public funds virtually impossible, considering that event costs must be covered before binding contracts can be signed.

Acquiring new, especially smaller, sponsors is proving quite challenging. For example, despite significant advertising efforts, the Rare Disease Run was a financial flop due to low participation. The same applies to our applications to the German TV lottery and other lotteries to be listed as a beneficiary. However, we are persevering; for instance, we have launched initial fundraising appeals on social media. We welcome your suggestions and will review their feasibility. We were delighted by the €250 in cash donations received at the general meeting and the 2025 information day, as well as the €1,670 in donations received in our club account – it's an encouraging start.

As already announced at the members' meeting in Bad Wildungen, the board will be reviewing the further financial planning and examining all key expenditure areas in detail. I would like to reiterate that starting with the next members' meeting and information day in 2026, members will be required to contribute to the accommodation costs.

I will report on the implementation of the financial safeguards based on the results of the financial planning in the next journal. However, I would like to share some figures with you now: We closed 2024 with a shortfall of approximately €30,000. This year, the situation is projected to be similar. This means that without stringent expenditure planning, we will no longer be able to operate by 2027 at the latest. The planned winter journal as an e-paper is a first step towards modernization and cost savings. This offers you the advantage of being able to read it on all devices such as smartphones, laptops, and PCs. The summer journal will remain in print.

As you can see, a lot is happening, and we need to address the current challenges not only financially, but also by thinking and planning across different areas. All of us and the associated work of the club remain at the heart of it all. Stay healthy and continue to enjoy the summer!

Your „finance officer“ Peter Hübner

Peter Hübner, as appeared in Alpha1 Journal 2/2024.

Dear members, dear Alphas,
Dear readers,

As the new year approaches, I don't want to look back, but rather forward.

Looking ahead, we've drawn up new financial plans, examined how the next few years will look according to our estimates, and determined that we're still benefiting from the buffer built up during the pandemic and will need to continue drawing on it. Unfortunately, we're steadily losing reserves, and now we need to work to counteract this trend.

It's hard to believe how many thoughts are going through my head when planning the 2025 budget: Where can we generate additional revenue? Why are we receiving a relatively small lump-sum grant – because I once looked at the grant amounts at the state level in Berlin and Brandenburg alone, and they are quite high. Therefore, I hope that we will also receive a lump-sum grant in 2025, which will give us planning security for the second half of the year and when we will finally reach the point where we are certain we can implement all projects next year as well.

We must succeed in developing further sources of revenue and reducing costs for 2025! We are currently working on concrete proposals for this and hope for the cooperation of everyone interested in our work.

This article is by no means intended as an admission of failure, but rather to contribute to transparency regarding the issues currently occupying the board and myself in particular. Because we want to maintain the same high level of advice, information, and support in the coming years!

Overall, we are looking forward to the coming year with confidence and to active work within the club. On behalf of the entire board, I would like to express my sincere gratitude to all donors, sponsors, and supporters. They are a vital pillar of the club.

So all that remains for me is to wish everyone a peaceful Christmas season and all the best for 2025.

Yours sincerely, Peter Hübner

Peter Hübner, as appeared in Alpha1 Journal 1/2024.

Dear members, dear Alphas,
Dear readers,

The members' meeting and information day 2024 have barely passed, and everyday club life has already caught up with us again, and the 2024 financial year is in full swing.

Following the presented audit report, the two auditors gave valuable suggestions for further financing options for our patient organization at the members' meeting.

Particularly in light of the high-quality work done so far, a possible membership fee increase was discussed. Inspired by this, members also suggested cash donations and bequests, perfectly in line with the spirit of our association: Alpha1 – that's all of us. A heartfelt thank you for that! We will seriously discuss these suggestions at the board meetings.

Inheritance donation to Alpha1 Germany eV – a taboo subject?

For the past two years, our patient organization has been receiving donations in lieu of flowers from funerals, both from members and from people we don't know. This means that, at the request of the bereaved, mourners donate to us instead of sending flowers at a funeral.

I furthered this by registering Alpha1 Deutschland eV as a donation recipient with a large funeral home in Berlin. Relatives are then presented with various organizations to which they can donate, if needed.

In addition to donations in lieu of flowers, there is also the option of receiving bequests. In this case, the testator stipulates that their estate, or a portion thereof, be donated to a charitable organization like ours. Through this form of donation, SOS Children's Villages received over €100 million in bequests in 2022. This trend is on the rise in Germany and is not solely attributable to the increasing number of childless testators.

Even though it is a rather sensitive topic, I would like to place it here to raise awareness that Alpha1 Deutschland eV can also be supported with this form of donation.

Anyone who would like to spread the word or has questions is welcome to contact me. A flyer explaining the background and purpose of donations to us and various ways to motivate donations will be published soon.

Just as almost everyone thinks about their estate, the topic of legacy donation is also part of this and should not be taboo.

Yours sincerely, Peter Hübner

Peter Hübner, Treasurer

Dear members, dear Alphas,
Dear readers,

You've now almost reached the last page of this journal, and the final article could easily be skipped, or is it worth reading? That, of course, is a decision everyone must make for themselves. In issue 1/2023, I promised to give you some insight into my duties as treasurer and board member. These include: First, processing invoices, including invoice verification, posting, coding, and payment via online banking. Online banking involves more than just transactions; it also entails administrative tasks. Another major aspect is collecting membership fees, which involves preparing the automated direct debit process using the member database and our linked bank account. Approximately 85-90 direct debits (%) are processed correctly. The remaining ones fall into two categories: one where the direct debit mandates need to be updated technically, and the other where bank details are invalid. This means that in these cases, we were not notified of a change in bank details. This generates unnecessary additional fees and work, as I have to contact each member individually and request their current bank details. This amounts to approximately 10-15 cases per year.

A third area of responsibility is sponsorship and fundraising (soliciting donations) in cooperation with the Chairwoman, Marion Wilkens. In addition to numerous phone calls and complex applications, the proper use of funds must be documented in the form of expenditure reports, entries in the transparency register, and on our website. Furthermore, donations exceeding €300 must be confirmed by issuing donation receipts.

Other tasks include compiling statistics for the cash report, preparing for the cash audit, and managing the assets (inventory list). Not to be forgotten is payroll accounting (for mini-jobs), including reporting to the Mini-Job Center and the employers' liability insurance association, as well as assessing needs and providing financial support to our self-help groups when required. In addition, there's the board work, which I also really enjoy. This includes discussing and passing resolutions. I'm sure I've forgotten one or two tasks. But that's irrelevant; what matters is that I enjoy doing it, even if it takes up some time alongside my full-time job.

Now, a look ahead to next year: The financing of our patient organization, with all its expenses such as counseling, journals, newsletters, and the information day, is secured upon receipt of grants and donations! This also includes membership fees, which will remain unchanged in 2024. Please note the following: Membership fees for 2024 will be collected during the first quarter of 2024. Those who are still paying out of pocket should transfer their fees by March 31, 2024.

I wish everyone a peaceful Christmas and a good start to a healthy and, above all, peaceful year 2024!

Yours sincerely, Peter Hübner

Peter Hübner, as appeared in Alpha1 Journal 2/2023.

You've now almost reached the last page of this journal, and the final article could easily be skipped, or is it worth reading? That, of course, is a decision everyone must make for themselves. In issue 1/2023, I promised to give some insight into my duties as treasurer and board member.

This includes, firstly, invoice processing with invoice verification, booking, posting, and payment via online banking. Online banking encompasses more than just bookings; it also involves administrative tasks.

Another major task is membership fee collection, which involves preparing the automated direct debit run via the member database and our linked bank account. Approximately 85-90 of these % transactions are processed correctly. The remainder fall into two categories. One category requires a technical update to the direct debit mandates. The other involves invalid bank account details. In these cases, we were not notified of a change in bank details. This generates unnecessary additional fees and work, as I have to contact each member individually to request their current bank details. This amounts to roughly 10-15 such cases annually.

A third area of responsibility is sponsorship and fundraising (soliciting donations) in cooperation with the Chairwoman, Marion Wilkens. In addition to numerous phone calls and complex applications, the proper use of funds must be documented in the form of expenditure reports, entries in the transparency register, and on our website. Furthermore, donations exceeding €300 must be confirmed by issuing donation receipts.
Other tasks include preparing statistics for the cash report, preparing for the cash audit, and managing the fixed assets (inventory list).

Not to be forgotten is payroll accounting (for mini-jobs), including reporting to the Mini-Job Center and the employers' liability insurance association, as well as needs assessments and financial support for our self-help groups when a need is proven. Alongside this is the board work, which is also very enjoyable. This includes, among other things, discussing and passing resolutions.

I'm sure I've forgotten one or two tasks. But that's irrelevant, because what's important is that I enjoy doing it, even if it takes up some time alongside my full-time job.

Now, a look ahead to next year: The financing of our patient organization, with all its expenses such as counseling, journals, newsletters, and the information day, is secured upon receipt of grants and donations! This also includes membership fees, which will remain unchanged and stable in 2024.

Please note the following information: Contributions for 2024 will be collected during the first quarter of 2024. Those still paying by themselves should please transfer their contribution by March 31, 2024. I wish everyone a peaceful Christmas and a happy and healthy start to 2024!

Peter Hübner, Treasurer

Members, dear Alphas,
Dear readers,

Re-elected, I will be managing the finances of our patient organization for the next two years and look forward to this task as well as working with the board! On behalf of the board, I would like to express my sincere gratitude for the donations collected during our wonderful information day in Bad Wildungen. The exact amount was €269.01 and 30 DM. I was pleased to round the sum up to €280.00. We gladly budgeted for and paid the costs of this special weekend. However, there is a slight disappointment regarding the costs for services that were not used. Our association incurred considerable expenses due to the fact that some members canceled their participation at short notice for various reasons or only used parts of the event (e.g., spontaneously choosing one night instead of two, not using the childcare arrangements). This is a shame. We are happy to support our members with these costs, but every expenditure should have a benefit or added value for our community. Due to the changed requirements of the hotels, which unfortunately no longer offer us short-term cancellation policies, we plan to develop clear rules regarding cost coverage and cancellations for future events.

The costs for the Maritim Hotel have been settled, and the budget, considering the reserves/assets, is once again at a level that ensures the continued operation of the association. Looking ahead: This year, we have received a commitment of €20,000 in funding from the health insurance companies for the first time. This is very welcome news.

The changes in the financing of self-help groups are also bearing fruit, with some groups having applied for and received lump-sum funding from health insurance companies or their associations. This cooperation also eases the burden on our budget. As announced at the members' meeting, we are continuing to work towards initially structuring our income to consist of 50% industry funding and 50% membership fees, private donations, etc.

Therefore, I can conclude this article with satisfaction and turn my attention to the other tasks, about which I will provide a deeper insight into my work in the next post.

Yours sincerely, Peter Hübner

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

Dear members, dear Alphas, esteemed readers,

It's always the same song… The year is slowly drawing to a close and everyone is asking for donations. Then the treasurer of Alpha1 Germany e.V. comes along and starts singing that same song again…

Yes, that sounds harsh. But seriously, we're fortunately still in a good financial position. Nevertheless, looking to the future, we mustn't ignore the external circumstances. On the one hand, there's the goal of securing funding for 60% through private donations, grants, and so on. We're currently on the right track, and it remains important to explore new avenues.

On the other hand, we must also keep an eye on the rising costs due to the current situation when it comes to organizing information days, printing the journal, or supporting group meetings.

It is therefore time for us to shift our focus regarding the financing of self-help groups (see pages 16/17). In the future, we will gladly provide financial support for a basic allowance to cover the operational costs of group leaders and for specific activities such as expert presentations, substantive group work, etc. These funds are intended to serve the purpose of providing information, education, and support regarding Alpha-1, thus benefiting those affected and their families. To ensure broader financial support, group leaders are also encouraged to actively seek funding from health insurance companies and social service organizations. This has been working exceptionally well in some groups for years!

To ensure that the hitherto stable financial situation of Alpha1 Deutschland e. V. can be maintained, I will sing the following song:

Support the association by soliciting donations for the patient organization from local businesses or your employer. Regional advertisements in company newsletters, intranet pages, etc., can also be helpful in this regard.

On behalf of the entire board, I would like to thank you for all the donations received so far. Every euro counts, and we will use it responsibly.

With the end of the year approaching, I wish everyone a peaceful and reflective Christmas season, and looking ahead to 2023, I am excited for the big event in Bad Wildungen!

Stay healthy and all the best!

Her

Peter Hübner

Peter Hübner, Treasurer

Dear members, dear Alphas,
Dear readers,

It's always the same old story… A year is slowly drawing to a close and everyone is asking for donations. Then the treasurer of Alpha1 shows up.
Germany e.V. and is singing this song again… Yes, that sounds harsh. But seriously: fortunately, we are still in a good financial position. Nevertheless, looking to the future, we mustn't ignore the external circumstances. On the one hand, there's the goal of securing funding for 60% through private donations, grants, and so on. We're currently on the right track, and it remains important to explore new avenues.

On the other hand, we must also keep an eye on the rising costs due to the current situation when it comes to organizing information days, printing the journal, or supporting group meetings. Therefore, it is time for us to shift our focus regarding the financing of self-help groups (see pages 16/17). In the future, we will gladly provide financial support for a basic allowance to cover the operational capacity of the group leaders and for specific activities such as expert presentations, substantive group work, etc. These funds are intended to serve the purpose of providing information, education, and support regarding Alpha-1, thus benefiting those affected and their families. To ensure broader financial stability, group leaders are also encouraged to independently seek funding from health insurance companies and social service organizations. This has been working exceptionally well in some groups for years!

To ensure the continued stability of Alpha1 Germany e.V.'s financial situation, I urge you to support the organization by soliciting donations from local businesses or your employer. Regional advertisements in company newsletters, intranet pages, etc., can also be helpful. On behalf of the entire board, I thank you for all donations received so far. Every euro counts, and we will use it responsibly.

With the end of the year approaching, I wish everyone a peaceful and reflective Christmas season, and looking ahead to 2023, I am excited for the big event in Bad Wildungen!

Stay healthy and all the best!

Yours sincerely, Peter Hübner

Peter Hübner, Treasurer Alpha1 Germany e. V.

Dear members, dear Alphas,
Dear readers,

In my article a year ago (issue 1/2021) I tried to maintain a positive outlook on the future in several respects – and I have not been disappointed!

Regarding the financial development of our organization, the forecast has proven accurate. As reported at the members' meeting, our coffers are well-stocked, and the share of income from industry has further decreased to 52 percent. We have thus successfully completed another step towards our 40 percent target. In this context, I will continue to advocate for the development of additional funding sources. I would be particularly grateful for any tips and information on institutions or companies willing to donate.

Above all, we saw an increase in private donations last year – a heartfelt THANK YOU to all donors on behalf of the entire board. Another milestone of the last six months was the publication of our financial statements. In addition to publishing them on our website, we submit the figures to the transparency register of the Federal Gazette. This not only fulfills our legal requirements but also provides a basis for applying for funding.

As a final milestone, I'd like to mention the direct debit process. Due to a contractual change with our bank, we were able to simplify the process somewhat. With only a few chargebacks, the direct debits went almost without a hitch. One reason for the chargebacks is outdated bank details. This incurs additional fees that we can all avoid. Therefore, we kindly ask that you inform us if you change banks. Looking ahead, the self-help groups are planning in-person events again this year. I was able to process the financial allocations for these events. I would particularly like to mention...
to particularly commend the commitment to raising their own funds.

The financing for our event in 2023 is also secured. Above all, we are looking forward to seeing as many people as possible again, or even meeting them in person.

Therefore, I remain positive and wish everyone enjoyable and successful in-person events. I expect to be able to draw a similarly positive conclusion in issue 01/2023.

Until then – as always, all the best – and above all, good health!

Yours sincerely, Peter Hübner

Dear members, dear Alphas,
Dear readers,

For over a year and a half now, a virus has been affecting many different facets of our lives. From my perspective as treasurer, I would like to offer a perspective on the current situation:

Despite all the difficulties, we were able to use the allocated funds for the planned purposes. Even the cancellation of the anniversary celebration did not result in any significant costs, so financing for the event is secured even if it is postponed. Because postponed is not canceled!

Nevertheless, income doesn't flow automatically from endless sources. The chairwoman, Marion Wilkens, and I have to work hard to secure it every year. For example, at the end of the year, we'll again be applying for federal funding for self-help groups, and I'm eagerly awaiting its approval. It must also be our shared goal to diversify the financing of our patient organization in the future. As I mentioned in my last post, I'd like to ask all members and those connected to our organization to keep their eyes and ears open for donors and sponsors. Please feel free to contact me if you have any new ideas or suggestions. Of course, anyone who wishes can also support us with a donation. You can find more information on our website.. Another very simple way to support us is to ask family, friends, and acquaintances who already shop on Amazon to order via www.smile.amazon.de and select Alpha1 Germany as the beneficiary. This costs us nothing but brings us additional income in the form of donations from Amazon.

Having taken over the position of treasurer at the start of the year, this is a good opportunity to take a brief look back: I was able to familiarize myself with almost all the relevant topics. What is new, and not just for me, is that we have been making our finances publicly available this year, specifically regarding our income. As an association, we have registered in the transparency register. We have also retrieved the income figures for 2018, 2019, and 2020 from our archives and made them available for publication on our website.

Looking ahead to the coming year, I am cautiously optimistic, both regarding the funding of our patient organization and the general situation. I look forward to seeing many of you at the anniversary celebration!

Therefore, all that remains for me is to wish you all, and everyone associated with Alpha1 Germany e. V., a peaceful Christmas and a happy and healthy New Year 2022!

Yours sincerely, Peter Hübner