… the children’s foundation Kindness for Kids has been supporting the orphans of medicine for 20 years
Foundation board member Dr. Anja Frankenberger, Charity Bracelet Trio, KFK Kids Camp
When nobody knows what’s missing. In Germany, over a million children suffer from a rare disease. It often takes years to diagnose, medication can usually not heal, and everyday life for families is incredibly difficult. The “Kindness for Kids” foundation takes care of the little patients and gives a lot of hope and laughter – for 20 years. A conversation with the head of the foundation, Dr. Anja Frankenberger.
WHY DID YOU FOUND KINDNESS FOR KIDS? HOW WAS THE SUPPORT IN THIS AREA IN GERMANY 20 YEARS AGO?
Anja Frankenberger: “The decision to commit ourselves seriously and permanently to children with rare diseases was made in the summer of 2002. At that time there were only individual self-help groups for rare diseases or the BAG Selbsthilfe (Federal Working Group). Otherwise there were no contact points for all diseases, no local specialists or access to them was simply impossible. There were also no therapists, hardly any approved medication and almost no information on the Internet. There was a big nothing. Even then, the need was immense. So it was clear to us, no matter how we get involved, things could only get better. A year later, we were the first foundation for rare diseases in Germany to be approved by the foundation supervisory authority and we have achieved a lot since then.”
WHAT DID YOU DECIDE TO FOUND A COMPANY?
Anja Frankenberger: “With over 7,000 rare diseases, there have been and still are so many different fates. Chronically ill children who require 24/7 care. Children who die young, leaving behind bereaved parents and siblings. Per se good marriages that simply cannot stand this permanent state of emergency in the long run. Siblings of sick children who fall behind enormously and are not called shadow children for nothing. The list for this is really very long and the need is high.”
WHAT DOES YOUR FOUNDATION FOCUS ON?
Anja Frankenberger: “Our focus is on two core areas. Meanwhile, on the one hand on health services research. Because the rarity of the disease causes a number of problems that underlie all of them. And within the framework of health services research, it is precisely about this: How is the patient cared for with his illness in our health care system today. We need usable data, a catastrophe in Germany, comprehensive best practice models for the centers, etc. In the beginning, we made a lot of start-up financing possible, from which, for example, the first guidelines on glutaric aciduria, a congenital metabolic disease, emerged. Over time, we have set up our own research funding program consisting of a) co-funding of self-help symposia, b) funding of a PhD in basic research, c) establishment of a EUR 40,000 healthcare award and d) the Kindness for Kids endowed professorship for rare childhood diseases in healthcare research. In the social area, we personally organize and accompany children’s camps and family breaks for different groups of illnesses throughout Germany. In addition, since 2020 we have established psychosocial counseling in crisis situations and enable children who are unable to attend school due to their illness to participate via avatars (telepresence robots).”
WHAT IS SPECIAL AT THE SOCIAL CAMPS? AND HOW MUCH CAN YOU CONTRIBUTE TO MEDICAL ADVANCES WHEN RESEARCH IS SO EXPENSIVE?
Anja Frankenberger: “The camps make a visible, noticeable and, above all, lasting contribution to the improved emotional state of the children and their families. Knowing I’m not alone under this black cloud, I have friends who feel the same way, I don’t have to explain myself and I’m not ashamed makes a real difference for everyone involved. With us they are in a safe place, together with other children and young people. They can laugh, deal with completely different things that are beautiful for them and have distance from their otherwise arduous everyday life, which is characterized by countless stays in hospitals, visits to doctors and therapists. In the field of medicine, we cannot do basic clinical research. That’s where the big players have to go. But in the field of health services research, it is about the situation as it is now and today in the health care system. The problems usually start with the rarity and here we can improve structurally by shortening diagnosis times, strengthening resilience, providing care close to home or access to specialists and generally creating transparency in the first place.”
DO YOU KNOW HOW MANY CAMPS AND TIME-OUTS THEY HAVE HELD SINCE INCEPTION?
Anja Frankenberger: “For our 20th anniversary this year, we researched that very carefully in our documents. That is a whopping 150 camps for over 1,500 children and their families, which we have organised, personally accompanied and carried out over the years. I am very touched by what we make possible here with our small team of women. Because you have to know that the participation of each child is very time-consuming, because everything has to be planned and organized as carefully and of course individually as possible.”
HOW HARD IS IT ACTUALLY TO HELP, KEYWORD DONATIONS AND BUREAUCRACY?
Anja Frankenberger: “It really is a time-consuming topic. In Germany, every transfer of money leads to a tax claim from the state. Since foundations are tax-exempt in their intended areas, the regulations are complicated and sometimes ignore the reality of life. The area of economic business operations is a science in itself, but charitable work is also associated with high hurdles, since you always have to provide proof that the recipient of the grant is really in need. Here you are forced to invade people’s privacy, which is distressing and uncomfortable.”
HAVE THE RECENT PANDEMIC YEARS CHANGED THE DONATION SITUATION?
Anja Frankenberger: “Of course, 2020 was extremely difficult for us as a foundation because nothing could happen, including no fundraising events. But for the children and their families, this time was a nightmare. The additional fears of infection, no care in the house, the social isolation, no balance outside. That is why we have established the crisis intervention mentioned at the beginning. There is a lot of money in the world per se. But you have to target the right people at the right time and that has never been easy. Fortunately, we now have many loyal companions at our side. For our anniversary year, we have come up with very charming campaigns that are almost impossible to say no to.” (Editor’s note: presentation of the campaigns at the end of the interview)
WHAT HAS CHANGED IN THE 20 YEARS SINCE YOUR FOUNDATION WAS ESTABLISHED?
Anja Frankenberger: “A lot has changed for the better. We now have umbrella organizations, countless new foundations, self-help organizations, there are 33 A centers for rare diseases, exome sequencing of the genome has found its way, gene scissors are here, a subtype of cystic fibrosis is curable, etc. All of this was simply unimaginable in 2003. On the other hand, volunteering is becoming less and less important, a fact that unfortunately says something about the state of our society, doesn’t it?”
WHAT DO YOU WISH FROM POLITICS?
Anja Frankenberger: “Definitely reducing bureaucracy. This is now intolerable, for families as well as for doctors, nurses and even for the pharmaceutical industry it could be significantly simplified without taking any risks. You could finally start with an electronic patient record. Doctor A still doesn’t know what B is doing. But in Germany we hide behind data protection. We prefer to manage and are rule pedants. In doing so, we lose sight of the people behind it.”
WHAT ARE THE BEST MOMENTS AT YOUR WORK?
Anja Frankenberger: “The time in the camps and the family breaks, the conversations and being together with the parents, to see how important joint activities are, how much “carefree” the days are when you can let go. You get so much back, you learn so much and you stay extremely humble. Every day I am aware of how quickly life can change fundamentally.”
HOW OFTEN DO YOU HAVE TO EXPLAIN TO PEOPLE WHAT RARE DISEASES ARE TODAY?
Anja Frankenberger: “All the time. Rare diseases are simply still the orphans of medicine. And even if we have already achieved a lot, we still have a lot planned and still to do for the next 20 years.”
HOW YOU CAN HELP KINDNESS FOR KIDS
ACTION 1 – THE KINDNESS FOR KIDS CHARITY SMS ACTION.
If many give a little … this is exactly the idea behind the “Help by SMS Charity” campaign, because helping is made easy here: simply send an SMS with the password KFK20 to the speed dial number 81190. The next mobile phone bill or the prepaid credit will be charged with 10 euros plus the standard SMS shipping costs of the respective mobile phone provider. Within a few seconds you will receive a free confirmation SMS that the help has arrived. PS: No donation receipt can be issued for support via SMS. The campaign is carried out with the support of Burda Direct Interactive GmbH.
ACTION 2 – THE “JEWELS WITH A MESSAGE” COLLECTION BY SYLVIE EDER:
The prominent Munich jewelery designer has designed an enchanting charity bracelet trio (see picture above). 20% of the sale of each ribbon goes to Kindness for Kids, available at www.sylvieeder.com
Kindness for Kids is the first foundation for children in Germany that has been taking care of children with rare diseases since it was founded in 2003 and has set itself the goal of improving the care and support for affected children and their families through active support.
The purpose of the foundation comprises two levels. On the one hand, it is about funding research. On the other hand, the support of children and their families in the form of personally accompanied family breaks and children’s camps throughout Germany: from Lake Chiemsee via Heidelberg to Hamburg or for sailing breaks on the Baltic Sea. The aim is always to improve the situation of affected children. Medical research is the guarantee for pioneering success in treatment. Taking time out together with lots of activities improves the mental state of the children. The foundation was set up as a private family commitment and approved by the foundation supervisory board in July 2003. Administrative costs such as rent and staff are paid separately. 100% of the donations benefit the projects. www.kindness-for-kids.de
company contact
Stiftung Kindness for Kids
dr Anja Frankenberger
Maximilianstrasse
82319 Starnberg
+49 8151 99 77 77 0
+49 8151 99 77 77 9
Press contact
Stiftung Kindness for Kids
Alexandra Köhnlechner
Maximilianstrasse
82319 Starnberg
+49 8151 99 77 77 0
+49 8151 99 77 77 9