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Sylvia Paul has been a member of the board and managing director of the KinderHerz Foundation for children with congenital heart diseases for over ten years. In an interview, she explains how funds are collected and what they are used for – and what role that plays Internet, crowdfunding and open science play a part.
Sylvia Paul is a business economist and initially worked in the tourism industry, where she spent a number of years in managerial positions Features worked, for example in the German Tourist Association. She later switched to public relations and Marketing and worked, among other things, as press spokeswoman for the working group of German airports and as association coordinator for private medical clearinghouses.

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What prompted you to look after heart-sick children?

In 1999 I met Friedrich Ludwig Müller, who had already worked as a PRAdviser worked for Hans-Dietrich Genscher and Walter Scheel. At that time, he himself could already look back on a long experience in fundraising with the current honorary president of the KinderHerz Foundation, Mr. Friedhelm Rentrop. Among other things, he co-initiated the Karl and Veronica Carstens Foundation and the German Foundation for Monument Protection.

I let him convince me to get involved with the heart children. At that time, Mr. Müller was already dealing with the Idea an international aid organization for children with heart disease and would prefer to publish all publications in German, English and French. But in the end we decided to start with a professional one Structure in Germany and that is how the KinderHerz Foundation was founded. Since then, the KinderHerz Foundation has been supporting the equipment of heart stations in hospitals and important cardiological and heart surgery research projects throughout Germany.

Keyword Internet: What percentage of your total donations have donations, promotions and shop sales that you have over your website ?

The Online-Fundraising for the KinderHerz Foundation is still in the development phase. However, we can see a general trend that the volume of revenue from proceeds and donations through our website is growing year on year. With the sum of the donations, which are based on traditional ways collected through long-term and large donations, but they cannot yet measure themselves. But that probably also has something to do with the fact that online donations for our Organization is not (yet) typical

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What is the reason?

My impression is that the instrument of online donations has so far mainly been used by those organizations successfully deployed to provide assistance in the event of a disaster. Where quick help is needed, online donations are better accepted.

In our case, however, many of our donors know us personally and long-term relationships with donors have often developed through channels other than the Internet. This People don't usually donate online.

Yet we are very satisfied with the structure we have achieved so far, because campaigns such as the children's heart forests give us the opportunity to support people through this path Engagement for the benefit of children with heart disease.

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Do you want to expand your online presence in the next few years?

The development of our website and the associated shop has so far been based on the principle: if someone can support us with a task, then we do it Projects also around.

The redesign of our website was given to us by the father of a heart child who works in this field. Unfortunately, the online income so far does not justify the fact that we have a larger one here Investment and in particular would fundamentally realign the web shop.

So you collect your money rather in a traditional way?

Correct. We organize charity events, for example, and also offer support for targeting exclusive charity events. In contrast to agencies, which organize charity events completely for an organization and then also carry out, we restrict ourselves to an accompanying and supporting role.

How much do you use online ticket sales or social media tools (Facebook, Twitter etc.) to prepare the events and reach the participants?

We help, for example, in press and public relations, make interesting contacts and look after attractive raffle prizes from the circle of our donors.

I know from some of our partners that they also communicate their events through social media channels. We ourselves have not done so far.


Well, that has to do with the self-image of the KinderHerz Foundation. We have to Objective It is assumed that as much of the income and donations as possible go directly to the children of the heart and that is why we rely on an organizational structure that is as lean as possible. Of course, this means that we have to set priorities in our work. The development and maintenance of social media such as Facebook, Twitter or Xing have so far failed due to a lack of time and manpower.

We have had the idea, however, to present themselves more strongly in the social web for two years. And we have only recently intensively informed ourselves internally about how we would like to structure our profile in the field of social media in a structured and professional manner. However, as long as we are not able to provide the necessary resources, without personnel and time, without neglecting our work for the heart minders, we still take a step away from this step.

Have you ever integrated online elements, such as auctions, into a charity event?

Yes, I am aware of this possibility. One of our partners recently introduced an online auction into a charity event. We have pursued it with great interest but have not yet been able to integrate it into our own portfolio for charity events.

With such innovative Methods there is always a certain skepticism on the part of the organizers and unfortunately we have not had any experience with it so far. So it will probably be a while before online auctions establish themselves as an integral part of our portfolio.

So do you rely on other strategies?

No, not necessarily. Good things sometimes take time. It was similar with our children's heart forests. The idea was born many years ago.

But it took until October 2010 before we had done enough convincing to be able to inaugurate the first children's heart forest in Schleswig-Holstein. Today there are already five forests, including a KinderHerz apple forest in the Uckermark. Two more are on the verge Implementation.

“Crowdfunding” has been increasingly discussed in recent years as a new form of financing for art and cultural projects, but also for social projects. Do you see opportunities for your foundation here?

We have previously received a small donation for our heart children through a project on Then we went with betterplace ins Conversation came. In addition, we have already designed our own project with which we would like to collect donations for the KinderHerz Foundation on an appropriate platform. For the implementation, we are currently in negotiations with other cooperation partners and celebrities whom we would like to involve in the project.

Once the preparatory talks have been completed and the Presentation has been successfully implemented on our own project website, we will start our first project. At this point in time, I can't say with XNUMX% accuracy whether we'll be able to do that this year or not until the beginning of next year.

How is donation money used?

Above all, we finance research projects. The treatment of heart children today and in the future can be done even better and with less burdens on the small body, which requires intensive research in cardiology and pediatric cardiac surgery.

The research results obtained can also be used to optimize further research projects.

Do you use research to encourage doctors and firms to develop new radiological procedures? How exactly does it look like?

A good example of how the research results obtained can be used to optimize further research projects is the Kinderheart Center in Giessen. There, one is currently preparing to prepare a request for support from the Children's Heart Foundation.

On the basis of this project design, we were able to establish that we have already promoted a similar project in Tübingen. We then launched a cooperation between the doctors in Giessen and Tübingen. This way, our resources for the heart children can be used even more optimally.

On its website, there is currently no documentation of the research results financed by donations from the Stiftung KinderHerz. Will this change soon for the benefit of their donors?

At present, we are very keen to make the results of our research projects more visible to the public. In the past year, we have set up an area on our website that will be used to document reports, data and research results. This area is currently not yet released.

So far, we have informed our donors about the use of donations and research results through a regular newsletter. As an organization, we face a certain dilemma with this question.

In what way?

On the one hand, we are encouraged to keep the administrative costs as low as possible in the interests of the heart children. On the other hand, social discourse shows that donors in Germany are increasingly interested in the use of donations and the results.

For this we would have to hire more staff and that would only be at the expense of heart children. Under the current conditions, we have therefore decided that helping children with heart disease is more important than even more comprehensive documentation. Our donors have these decision also supported so far.

OpenScience now offers the opportunity to document research results openly and transparently, to accelerate the dissemination of knowledge, and to develop new techniques and procedures more quickly. Does the Children's Heart Foundation take advantage of the possibilities offered by Open Science in the implementation of research projects?

The implementation of Open Science is so far, so I can say the principle, not yet provided. But it is an interesting approach, which should be considered more strongly in the future. It is certainly also a matter of convincing our co-operating doctors.

So far, the doctors publish according to our Deselect their research results primarily in renowned specialist publications. An increased social debate about Open Science would certainly be helpful in order to make this form of collaborative work usable for our research projects and to remove obstacles.

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