In Conversation with Dr. Hakan Cetin: What We Know About ALS Today
With the second edition of the Alfred Tatar special jersey, First Vienna FC 1894 is once again supporting research into Amyotrophic Lateral Sclerosis (ALS). The Medical University of Vienna is among Austria’s leading research institutions in this field and works together with international partners to advance knowledge and develop new therapies for this serious neurological disease.
What exactly ALS is, what scientific progress has been made in recent years, and why public awareness and donations are so important for research are explained in this interview by Vienna supporter Dr. Hakan Cetin, Consultant Neurologist and Senior Physician at the Department of Neurology at the Medical University of Vienna.
Many people have heard of ALS, but often know little about the disease. What exactly is ALS and what happens in the body?
- Amyotrophic Lateral Sclerosis, or ALS, is a severe disease of the nervous system. It primarily affects so-called motor neurons in the brain and spinal cord. These nerve cells control our muscles. Their degeneration leads to progressive muscle weakness, which gradually affects more and more parts of the body. The disease impacts mobility, speech, swallowing, and eventually breathing. Cognitive abilities usually remain intact for a long time, meaning that many patients experience the progression of the disease very consciously.
How common is ALS in Austria and how many people are currently affected?
- Around 350 people in Austria are diagnosed with ALS each year. Although the disease is considered rare, it is by no means exceptional: over a lifetime, approximately one in every 350 people will develop ALS. Currently, around 1,000 people in Austria are living with the disease.
Are there known risk factors or groups of people who are more likely to develop ALS?
- The causes of ALS are still not fully understood. We know that genetic factors play an important role. In addition, various environmental and lifestyle factors are being discussed. In most cases, however, the disease likely results from a complex interaction of several factors. Men are affected slightly more often than women.
What early symptoms should patients and their families take seriously?
- The first signs can vary widely and are often non-specific. ALS frequently begins with weakness in one hand or foot, muscle twitching, muscle cramps, or speech difficulties. Some patients stumble more often or notice that everyday activities suddenly become more difficult. Such symptoms should be medically evaluated, especially if they worsen over time.
How does the disease typically progress, and how does it affect everyday life?
- ALS progresses very differently from person to person. In some individuals, the disease advances rapidly, while in others it develops much more slowly. As muscle weakness increases, many everyday activities become more challenging. Depending on the affected body regions, patients may experience difficulties with walking, hand function, speaking, or swallowing. In later stages, the respiratory muscles can also become involved. However, modern assistive devices, specialized therapies, and comprehensive multidisciplinary care can help preserve independence and quality of life for extended periods.
What treatment options are available today, and what progress has been made in recent years?
- There is currently no cure for ALS. However, medications are available that can slow disease progression. Particularly encouraging is the development of genetically targeted therapies for the first time. In addition, symptomatic treatment, respiratory support, and multidisciplinary care have improved significantly in recent years.
The Medical University of Vienna is involved in numerous research projects. What are your current priorities in ALS research?
- At the Medical University of Vienna, we focus on several aspects of ALS research. These include identifying biomarkers for earlier diagnosis, investigating genetic causes, studying disease mechanisms in laboratory settings, and conducting studies aimed at improving patient care. Another key focus is participation in international research networks and clinical trials.
Are there any developments or study results that provide hope for more effective therapies in the future?
- Yes, absolutely. ALS research has made tremendous progress in recent years. New findings in genetics, modern biomarkers, and innovative therapeutic approaches are opening possibilities that would have seemed unimaginable just a few years ago. Many experts are convinced that we will see additional effective therapies in the coming years.
What role do genetic factors play in ALS, and what is the significance of genetic testing?
- Approximately 10 to 15 percent of all ALS cases are directly inherited. In addition, genetic changes can also be identified in people without a known family history. Genetic testing is therefore becoming increasingly important. It not only helps us better understand the disease but can now also influence treatment decisions, as targeted therapies are already available for certain genetic forms of ALS.
Can ALS be prevented, or are there lifestyle factors that may influence the risk?
- At present, there is no proven way to prevent ALS. A healthy lifestyle is generally advisable, but no specific measures are known to reduce the risk of developing the disease. This is precisely why research remains so important.
At what age does ALS typically occur, and are there differences between men and women?
- ALS most commonly develops between the ages of 50 and 70, although it can occur at any point during adulthood. Men are affected slightly more frequently than women, although this difference becomes less pronounced with increasing age.
What support options are available for family members caring for someone with ALS?
- Family members often make an enormous contribution to patient care. In addition to medical support, there are nursing services, counseling centers, self-help groups, and specialized centers that assist both patients and their families. These services can provide significant relief.
Why are research funding and public awareness so important for ALS research?
- Despite major advances, ALS remains one of the most severe neurological diseases. Research funding is essential for developing new therapies and conducting clinical trials. At the same time, there are still considerable gaps in patient care. Many patients do not have easy access to specialized ALS centers, even though multidisciplinary care involving neurologists, therapists, nurses, and other specialists has been shown to make a substantial difference. Public awareness and donations therefore have a double impact: they promote the development of new therapies and help improve patient care in a sustainable way.
How can private individuals, companies, or sports clubs support ALS research?
- There are many ways to help: through donations, charity events, awareness campaigns, or joint initiatives such as those organized by First Vienna FC. These activities provide not only financial support but also raise awareness of a disease that often receives too little public attention.
What would you like to say to people who are facing an ALS diagnosis for the first time?
- First of all: you are not alone. Receiving the diagnosis is a life-changing moment, but today there are significantly more support and treatment options available than there were just a few years ago. It is important to contact a specialized center, accept support, and, despite all the challenges, focus on the possibilities that do exist.
Final Question: If you could make one wish for ALS research over the next ten years, what would it be?
- My greatest wish would be for us to detect ALS so early that treatment could begin before severe symptoms develop. If we succeed in protecting nerve cells in time and stopping the disease process at an early stage, we could fundamentally change the lives of many affected individuals. The scientific progress of recent years gives us legitimate reason to hope that this goal is truly achievable.
Donate Directly to ALS Research
In addition to purchasing the Alfred Tatar special jersey, supporters also have the opportunity to donate directly to ALS research.
Department of Neurology, Medical University of Vienna
IBAN: AT36 2011 1404 1007 0700
BIC: GIBAATWW
Reference: UE761010012
