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Érintettek Parents’ Association for the children involved in childhood cancer
From the name it won’t be a surprise, we, the founders of the Association are mainly parents of children cured from childhood cancer or leukemia. The president is Erika Dr. Borszekine Cserhati, and her two vices are Anita Keresztes and Dr. Peter Hauser.Erika and Anita are both parents of three children, one of whose suffered by childhood cancer, and Peter Hauser is a pediatric oncologist.
The Association is proud to include parents, survivors, doctors, nurses, psychologists, psychotherapists, socail workers and even affected civilians, but one thing is common: everyone does their work besides their normal jobs, on a total charity base.
The birth of the organisation was due to the urge we felt that we wanted to give back something of the great support we received during the treatments. It all came naturally; we knew we can’t sit and do nothing after seeing the problems of the families involved and knowing there are areas where much improvement can be done with a bit of attention, energy, and love.
We teamed up in 2016 and formed the Érintettek Association. There is no English equivalent for the word Érintettek. Perhaps the word involved or the phrase touched one is the closest.
We proudly say we are enthusiastic amateurs; we don’t do this for a living, we’re not professionals. But it certainly doesn’t mean we don’t do everything we can to only have programmes that are 100% in line with the official medical and professional points of view.
Dr. Peter Hauser oversees this medical authenticity.
As the saying goes „every cloud has its silver line”, and we can tell you our friendships are definitely the silver line of the difficult things we all went through. We are proud and happy to say we can always lean on each other and have each other’s back.
To very briefly summarize the wide scope of the Association’s activities:
Our first great program was a storybook for children. We have also translated it into English, and by the end of 2023, into Ukrainian, too. This is a tale that presents the path of healing through the stories of four brave children with different diseases. The drawings are realistic and accurate, so that the children would recognize their hospital environment. It eases the fear of the unknown in children and parents.
Next, we have the Érintettek’s Book. It is an information book for adults, for families of children with cancer. We all had a shared experience when we faced the disease, we were frightened to death. We wanted to prevent parents from misleading, frightening information on the Internet, and came up with the idea of having this book.
It is authentic and objective because each word was examined, approved, or written by our healers. It’s authentic and personal because involved families have written in it, too. The main thing is that parents receive information in plain language, and so they don’t have to wait for answers. Our goal was that the parents have everything that could help them in one place. All the correct and important information about healing.
The biggest added value of the book is that more than 30 families sent comments, best practices, and good advice on each chapter. In the book parents can read in detail about the most common childhood malignant diseases, the symptoms, necessary treatments, the chances of recovery, diagnostic and therapeutic procedures, psychological topics, social benefits, private schooling, the most valuable information about hospital and home life, hygiene rules, pets and so on.
Now we are ready with the second, refreshed edition, and the book will be published later this year.
Our other successful program for kids is the Érintettek’s Chain Program. Very similar to internationally known Beads of Courage programmes, it is on in all the paediatric oncology centres in Hungary.
Children receive a starter package from us, including a thread, and a little healing elf. Children can lace up beads on this thread that they receive during therapy.
In 2016, we founded the Érintettek Award. When founding the Association, one of our most common feelings was compassion and gratitude, and the prize symbolizes it. Each year we give them in two categories: one is a doctor, and the other is a helping healthcare professional (nurse, psychologist, physiotherapist, etc.). The award comes with financial recognition.
We wanted to put a little spotlight on such magical personalities like our healers, wanted to express our gratitude towards them, to thank them, and we wanted to tell them how important it is, if they are attentive, kind with us, if they have a small smile in the most serious phase of our life full of fear and worry.
We wanted to put a little spotlight on such magical personalities like our healers, wanted to express our gratitude towards them, to thank them, and we wanted to tell them how important it is, if they are attentive, kind with us, if they have a small smile in the most serious phase of our life full of fear and worry. We wanted to show them that they can multiply our force, the strength of a sick children, or of a desperate parent. We hold our award ceremony every year in the advent period. Children perform in front of their healers, they sing, recite, play instruments, dance.Healed children express their gratitude in a video and send delightful flashbacks, messages to their healers.
We started this programme two years ago. It is a podcast series, called Healing Conversations. An old dream has come true with it, because we asked 3 professional reporters to conduct the interviews, they are talking with doctors, nurses or psychologists.
We are convinced that the most important thing on the road to healing is trust, to have confidence in healers, and therefore we wanted to present the healers in more depth, to enable the parents to get to know them better.
During the podcasts we learn more about them, about their personal life, their families, their hobbies, why they chose this profession, what is the hardest part for them, how they recover from difficulties – they tell us lovely stories. Besides them, there are reports with healed young people and parents as well, they can share their experiences, and these are also extremely useful for other involved families to develop a crucial trust, to overcome doubts, and fears. We feel that this project fills a gap, because it is a forum for scientific topics as well, where we have the possibility to hear about new treatments, innovations, events that’s related to childhood cancer.
The videos are published on different forums (website, Youtube channel, Facebook page).
Érintettek Excursion is one of our most popular programmes, we organise it once or twice a year. These are family excursions, where we have two major goals:One of course is to be together in a cool and relaxed way, and not only with recovered children and friends, but we encourage families who are still undergoing treatment, to join us.This way we can fulfil our second goal, to encourage new families to get to know us, and see a bit of the team and the work of our Association. And of course, to show them the comfort of the fact that these children are healed and there is future, there is hope for them, they will get here one day. These occasions are always spent in great mood: we discover very nice places around Budapest. We spend time together, walk and talk, eat and drink, play and have fun, having a good time.
Last year we established the Érintettek Help Line. It aims to provide professional help to those in need from the involved families. We approach them with compassion, so that they know that they are not alone in times of crisis.
This Help Line was created by two of our fantastic colleagues. Both Szilvia and Bogi are Lutheran pastors and mental health professionals.Here not only close family members, but friends and other relatives can also ask for help by phone. They can share their feelings, thoughts, or seek advice on various spiritual problems.
Érintettek CapPing programme is a lovely one. The idea came from an involved grandmother. She began to crochet hats, shawls and toys and asked her daughter to take them to the clinic and give it to children in need. This grandma’s hobby then turned into a great Program. A
Facebook group was formed to help organising the collection of the things that are prepared throughout the country. Today this group has more than 3000 members.
Érintettek Blood donation days are also a great example of taking a simple, common programme and turn it into something communal and big.We started to organize blood donation events to encourage other people to have this revelation of how important blood is in the healing process, and we consider it a big success every time we have a first-time blood donator or a record number of participants. Moreover, since the very first one, these blood donation days became social events with kids, friends, families spending time together, again, eating, drinking, get to know each other and have a lot of joy from being together.
One of our latest programs is the late effects and follow up care homepage, which is unique in Hungary. We came up with the name utana.hu (means after.com) to cover the project, and it refers to the wholeness of this matter because we wanted to collect everything to one place, which comes after the active treatment period, a place where civil people can have an impression on follow up care. We didn’t want to be too professional, too medical, but neither too emotional or too scary for people who are undergoing or underwent cancer treatment. Although we created the homepage with professional help, the aim is to promote it for civil people, parents, and survivors.
One of our latest programs is the late effects and follow up care homepage, which is unique in Hungary. We came up with the name utana.hu (means after.com) to cover the project, and it refers to the wholeness of this matter because we wanted to collect everything to one place, which comes after the active treatment period, a place where civil people can have an impression on follow up care. We didn’t want to be too professional, too medical, but neither too emotional or too scary for people who are undergoing or underwent cancer treatment. Although we created the homepage with professional help, the aim is to promote it for civil people, parents, and survivors.
There are
- ncouraging words from us,
- just as descriptions of the most common late effects and implications on their emergence,
- possibility to get to know other survivors
- news and articles on important follow up care events and organisations
- comforting and motivating stories of survivors
- and Dr. Hauser also prepared detailed guidelines for general doctors who deal with adults and can have patients coming in saying “I’ve had neuroblastoma when I was 2, what do you think I need to have regularly controlled?”
We organised a mini conference to promote its launch with a lot of our most appreciated doctors and healthcare professionals giving presentations on the most important topics, these videos can be watched in the site as well.