Published on April 3, 2026
Beyond the Statistics
What if the key to healing ALS is not found in the lab, but in a life story?
An incurable disease, or a puzzle waiting to be solved? On the transition – from studying the disease – to studying the patient.
Recently, respected israeli journalist Oren Nahari shared that he was diagnosed with ALS (Amyotrophic Lateral Sclerosis).
This is a degenerative disease of the nervous system, currently defined as incurable.
Its causes are not definitively known, and there is still no treatment that manages to stop its progression.
The disease affects the motor neurons – the nerve cells that enable voluntary movements in the body.
When these cells are destroyed, the muscles gradually weaken until paralysis, in a process that varies from patient to patient and affects speech, swallowing, movement, and breathing.
Oren Nahari joins Moshe Nussbaum and a series of public figures who have raised awareness of the disease in Israel and around the world; from the astrophysicist Stephen Hawking, who lived five decades with the disease against all statistical odds, to Eric Dane, star of “Grey’s Anatomy,” who passed away this past February.
Each such case shakes the public and brings back to the surface the great puzzle of this disease and emphasizing how much remains unknown.
A rare disease – and a scientific mystery
At any given moment, between 600 and 700 people in Israel are living with ALS.
The most striking figure in the research is that only about 5% to 10% of cases are attributed to a clear genetic cause.
All the rest are defined as “sporadic” cases. In simple words: in the vast majority of cases, science still cannot say with certainty why the disease appears.
Countless studies are being conducted examining environmental connections – such as studies that have pointed to a possible link between air pollution exposure and the prevalence of the disease – but for the diagnosed patient, this information remains purely theoretical. They receive no tools for prevention or courses of action beyond acceptance and coping with the complex news.
The conception that shapes the discourse
Over the years, many hypotheses have been examined: injuries, toxins, inflammatory burden, physical trauma, and emotional trauma. The field of psychoneuroimmunology indicates that the human body operates as a complex system in which emotions, the nervous system, and the immune system all influence one another.
Research in this field indicates that sustained emotional burden or unprocessed trauma may be linked to inflammatory processes in the body, which can also affect the functioning of nervous systems. However, the direct connections between these mechanisms and ALS are still not fully understood, and the average patient hears a short, sharp sentence: “There is no cure.”
When a person receives such a diagnosis, they encounter an entire system of underlying assumptions.
The question is whether the problem lies only in the disease, or also in the framework of thinking from which we study it.
One very significant underlying assumption receives almost no place in the discourse – and that is the assumption that places the person themself at the center of the investigation.
At “The Red Swan” we believe that the person is not only the carrier of the disease, but also an active component in the process of understanding and coping with it – and this, without detracting from the biological complexity of the disease and the limitations that currently exist in medicine.
Expanding the framework of healing
Healing is not measured in binary terms of “healthy” or “sick.” Healing is a multidimensional process that occurs across different layers of existence – physical, emotional, environmental, and consciousness.
Sometimes, the journey with the disease is what brings a person to a place of inner wholeness, reconciliation, and truth – a place that might never have been revealed otherwise.
Healing, in its deepest sense, does not always look like clinical recovery; sometimes it looks like completion, like a deep connection to oneself, or like an inner freedom within limitation.
Medical research usually focuses on what can be measured in the laboratory, for example: genes and proteins. These are critical areas, but they may not tell the whole story.
The body is not an isolated biological system; it is a living system in constant relationship with personal history, physical environment, memory, and an emotional world that must be taken into account and in proper proportion.
The Red Swan: A private research lab for healing
At “The Red Swan” we study healing processes from the understanding that alongside existing knowledge, there are also variables that are not yet fully mapped or measured.
We meet people coping with complex conditions, including ALS patients who are seeking for a thread of hope within the fog.
Our shared perspective unites philosophical–consciousness depth with clinical and practical observation.
The work process begins with creative, deep, and comprehensive assessment. In certain cases, the very act of connecting details that once seemed unrelated – such as past injuries, emotional burdens, and environmental interaction – opens up new directions of inquiry, even if they do not necessarily lead to a change in the course of the disease.
Our work also includes the development of personalized processes and formulas, as part of an attempt to address the visible and hidden interfaces of the person:
- Consciousness and trauma: developments that deal with the impact of life events and memories on consciousness and the body.
- Environment and toxins: addressing environmental exposures.
- Physical injuries: addressing the consequences of injuries, physical traumas, and accumulated inflammatory burden.
And so forth.
For example, in the assessment of a patient diagnosed with ALS, whom we had the privilege of accompanying, a clearer picture emerged when we integrated a history of injuries that affected the spine over years, significant emotional burden, comprehensive medical condition, particular lifestyle, and environmental parameters that were neglected along the way.
The healthcare system offered her supportive treatment and monitoring, but did not open a space for deep inquiry into the causes that led to the onset of the disease.
These causes are not only a personal question – they are a scientific question.
If there is an understanding of the cause, or even just a loose thread – it may also open a new way for observation and for working – a path that could lead to a breakthrough in healing.
Studying the patient, not only the disease
A person with a severe illness is almost always subject to fears and to great dependence on those around them.
The conception of “there is nothing to do” is transmitted through the air and makes it harder for the person to dare and seek a new path.
And the factors involved in such a situation usually do not take into account that a complex system requires complex inquiry.
Imagine a reality in which every patient becomes the center of a deep investigation: their spirit, their medical and general history, the environment in which they live, their personality, and the relationships that shaped their life.
After all, a rare disease is an opportunity.
A person suffering from a rare disease, in their unique mission, is no different from someone with an exceptional talent. Both, by their very existence, can teach humanity about breakthroughs it has not yet encountered.
Patients with diseases considered incurable can be the mirror through which we learn about the infinite space of healing and manage to push boundaries – if only we change our approach to the matter.
The question we are still afraid to ask
“Do you feel your time has come?” “Do you feel you have fulfilled your purpose?”
In incurable diseases in particular, and in serious illnesses in general, the discourse tends to be a discourse of struggle: “victory” or “defeat.”
The question about the readiness to die does not seek an answer born of despair; it awakens the choice for life – for as long as it continues.
Because what is required in such a situation is a change of language, an acknowledgment of the illness itself as also part of the path – not out of surrender, but out of a desire to understand, to explore, and to choose how to live within it and beyond it.
It is the right to investigate healing without judgment, without criticism, and without the expectations of the surrounding world.
We believe that every such inquiry illuminates something broader – not only for the person themself, but also for human understanding as a whole.
Today, the establishment – including the Ministry of Health, insurance companies, and academic institutions – controls the discourse and the research of your disease, but almost does not recognize the right and the need for such personal inquiry as an integral part of research.
Those who seeks it are usually required to fund their hope and research from their own pocket, but the absurdity is even greater: even when a person chooses to invest their resources and investigate their own vitality – the results of their research remain in the dark. This precious information is not collected, not cross-referenced, and does not become part of the shared scientific body of knowledge.
While enormous resources are directed toward the measurable management of the disease, the individual remains alone facing the financing of investigating the possibility of healing, and the unique knowledge they uncover is lost for humanity as a whole.
Don’t be a statistic, be a researcher
Stephen Hawking was not just a statistical outlier – he was a researcher whose mind was busy cracking the secrets of the universe while his body weakened, and perhaps precisely because his body weakened.
He refused to be a statistic and became an active component in his own life.
It is possible that through the kind of research we propose, we could have gained a deeper understanding of additional dimensions of his life force, and perhaps opened new avenues of thought regarding the physical coping as well.
The path to breakthroughs always begins with a question brave enough to expand the boundaries of what is known. To learn and evolve within the healing space of uncertainty.
Such inquiry does not cancel science – it takes it one step further. And there, within that deepening, lies hope.
Deep observation and a willingness to explore requires courage from the patient.
If the awareness that you are the active part in the illness becomes part of our prevailing consciousness, perhaps it will make it easier for patients to embark on an open journey.