About Us

The Hungarian Foundation for Corpus Callosum Disorders (AgCC):

Eszter Szabóné Katona, Founder:

As a child, I was slow. It would take me four hours to eat lunch, and I had a hard time learning to tie my shoes and tell time. At age 6, I was assessed, and they told my mother, "She's a little slow, but she should go to school," even though I didn't even meet the 20kg weight requirement for school at the time; I was only 19kg. Unfortunately for me, I was taught to read using the Zsolnay method, and because of it, I still struggle with reading aloud today. As I know now, my slowness was obviously due to my Agenesis of the Corpus Callosum. I struggled through school with mediocre results and eventually dropped out of university; I simply couldn't handle the volume of material. Coming from a family of intellectuals, I was very ashamed of this at the time, but today, I am very proud of the 2.5 semesters I did complete (at ELTE, Faculty of Science, studying to be a Geography teacher). The stress inside me also took a toll on my spine, which is when I began to experience periods of paralysis due to what I believe was Scheuermann's disease. From 2000 to 2002, I lived in Australia, where I successfully completed a college-level course in Tourism Management—the equivalent of only a vocational qualification back home. While I had been struggling in Hungary, I passed a law exam there with a 92% score—in English. The education system there is completely different; it's project-based and doesn't focus on rote memorization. In 2007, due to severe headaches following my two pregnancies, the head of the headache clinic ordered an MRI. That's when it was discovered that I have Agenesis of the Corpus Callosum. However, the doctor didn't address the issue, and absolutely nothing came of it. In the same year, I went to a different foundation where they determined I had dyslexia. I went back to work in 2009, and somehow, I couldn't find a job without my father's help. (Somehow? Today, I know why.) I constantly felt that there was more to it than just dyslexia, which led me to the Adult ADHD Center. There, in 2020, I finally received the diagnosis that I have 'dys' symptoms (in my opinion, dyscalculia as well), along with autistic and ADHD-like traits, all stemming from Agenesis of the Corpus Callosum. Since then, I had another MRI in January 2022 to get a higher quality image, and I started researching this condition. You can see the results of this work in the Foundation, as well as in the many translations and conference attendances I've undertaken. Additionally, I run a small business where I am introducing an American parenting method to Hungary at elenkgyerekek.com (you can look it up if you're interested), and I also work part-time, four hours a day, as an administrator.

Irén Tormáné, President of the Board of Trustees:

My name is Irén Tormáné. I have five children, three of whom are ill. I myself have mitochondrial disease and a spinal condition. I am not personally affected by this disorder, but my connection is as a parent. 

I have a 14-year-old son who is very severely affected by AgCC. My child has multiple disabilities. He also has mitochondrial disease, a more severe form of it that only about 200 people in the world have. 

The brain disorder has led to a severe disability; his developmental level is equivalent to that of an approximately 10-month-old child. Unfortunately, he has been ill since birth but only received a definitive diagnosis in 2020. Since then, he has had to take numerous dietary supplements and medications. We also attend various treatments and developmental therapies.

Tímea Kun, Board Member: 

I am personally not affected by AgCC, yet I consider it important to take part in the work of the foundation. I believe that the strength of a community comes not only from supporting those directly affected, but also from the people who feel it is their calling to help others.

I accepted the position on the board of trustees because I wish to promote the foundation's goals: supporting those affected and their families, providing reliable information, and raising public awareness. I believe it is everyone's responsibility to give attention and space to rare diseases and disorders, as acceptance and understanding create value for all.

As a trustee, my aim is to contribute through my work to ensuring that more and more people learn about AgCC, and that those affected can find a supportive community in which they are not alone.

Supervisory Board:

Tamás Csaba

When I was 18 years old, I found out that I have partial brain cortex absence (AGCC). It was discovered during a simple hand numbness investigation, and at that time, I was told it was only a congenital condition that didn't require treatment. Later, when additional neurological symptoms appeared, I sought help again, but I still didn't receive meaningful information – they only prescribed me sedatives. From my personal experiences, I know how difficult it is to live without answers, and how important it is to have reliable information, understanding, and support. That is why I truly value the work of the Disorder of the Corpus Callosum Foundation: it provides an opportunity for those affected to connect with each other, and no one should be left alone with their questions. As a member of the supervisory board, my goal is to contribute to ensuring that the foundation reaches as many affected individuals and families as possible. 

Renáta Várady

I am the mother of a six-year-old girl. My daughter was born with a special nervous system – I know that now. But I didn't know for a long time. And if it weren't for the Corpus Callosum Foundation, I might not know today either. Something "abnormality" was detectable in my daughter's brain even as a newborn – she was born with cysts, and she was operated on when she was just under a week old. All kinds of medical terms appeared on the hospital documents, but no one explained what they meant. No one told me that it was a deviation of the corpus callosum – a developmental difference that could affect how my child perceives, moves, thinks, and learns. When she was three years old, Eszter – a dedicated founder of the Foundation – reached out to me. She found me on the internet and asked if I knew what the technical terms on my papers meant. I didn't. Eszter helped me understand. She was the first to speak to me like a mother – not just as a "parent behind a case." And then the picture began to come together. The cysts were only symptoms. The real foundation of everything I experienced with my daughter was a developmental disorder of the corpus callosum – but I only learned about this through the foundation. Today, I understand not only my daughter better but myself as well. I know that what others might see as tantrums, delays, or "oddities" is actually a completely different neurological functioning. And I also know that I am not alone in this.

Dr. Lilla Sipos, The Foundation's Psychologist:

My name is Dr. Lilla Sipos. I am a psychologist and the mother of three children. I graduated from ELTE University with specializations in Health Psychology and Developmental Psychology. After completing my degree, I remained at the university to pursue my doctorate. My research focused on infant development, mother-infant interactions, and the development of premature infants. From 2006 to 2020, I worked as a lecturer at ELTE. Alongside my academic and research activities, I have always practiced as a psychologist. For seventeen years, I was the psychologist at the Educational Counseling Center in Budapest's 15th district. During this time, I supported and guided hundreds of children and families. I also served as the director of the institution for a period. I am trained in Gendlin's Focusing Therapy and Ayres Sensory Integration Therapy. I am also a certified psychodrama leader and a trainer in child psychodrama.

Contact: Email: lillasipos@gmail.com, Phone: +36 30 352 0235