Presentation
Our Foundation project is currently taking shape. Our Foundation will be based in Switzerland, and we plan to work with families all over the world, primarily in Europe and the United States. We aim to be completely independent of public administrations (which means not accepting or receiving any grants or assistance from them), a basic principle that allows us to express ourselves clearly, work without pressure, and defend the rights of patients and families like us in the best possible way.
Our intention is to work for rare genetic diseases affecting the Central Nervous System (CNS) in general, and more specifically for Alternating Hemiplegia of Childhood (AHC). Also for neurological diseases and other brain dysfunctions.
Our sincere congratulations for the work, dedication, and efforts of all families with children affected by this type of pathology, in different parts of the world. We highly appreciate their efforts to raise awareness of this type of rare disease (which affects a very small percentage of people) and their commitment to raising funds for scientific research that helps progress towards obtaining a definitive cure for some of these diseases.
https://humantimebombs.com Well done friends!!
We want to complement all this work and effort, however our main concern is more short-term. Scientific research progresses very slowly, logically depending on the available funds. Meanwhile, our children are growing and aging, and in many cases, they are not receiving adequate care. Their development has many limitations and gaps. Their crises and episodes are often poorly controlled, with the risk that this entails. Many doctors are completely unaware of the implications of some of these serious diseases (such as AHC) and are unable to adequately address the needs of the patient, much less provide adequate guidance to families. Parental involvement is necessary and imperative so that their children can progress properly, although many families do not have the adequate financial means to dedicate themselves to these tasks and at the same time ensure their survival.
We often ask ourselves questions while trying to find answers. Some of them might be:
Is it possible to reduce conventional medications in our sons to eliminate them more or less completely?
Is it worth keeping our sons in a more proactive situation, with fewer drugs that suppress their brain functions and prevent them from progressing properly?
Is it possible to work to reduce the frequency and intensity of epileptic seizures, dystonia, etc., outside of conventional medicine? Is it worth exploring these types of options?
Can we try to make the brain suffer as little as possible, by reducing the frequency, intensity and duration of attacks?
Can we allow the progress made with great effort in the development of a sick young boy to be reversed following a poorly managed episode, seizure, status epilepticus, or similar?
Can we try to keep the brain in the best possible condition?
Can rebalancing neurotransmitter activity help improve the condition of these young people?
Can we help our sons by taking care of their digestive system?
Can metabolic therapy with amino acids be a valid option?
The DNA chain in this type of dysfunction fails primarily at one point and secondarily at other points due to the primary dysfunction, because the essence of DNA is a chain combination of different complex metabolic processes. There is no cure for the primary dysfunction, but can secondary DNA chain dysfunctions be improved?
Can we say that a strict diet is interesting and necessary for our sick children?
What benefits can quality organic food bring to our children?
Why is it important to maximize the immune system of our sick children?
How to calm a deeply disturbed CNS, without side effects?
There are many other questions we are thinking about and at the same time we are trying to find valid answers with the support of the people who collaborate with us.
The economic independence of affected families is a priority for us. A financially independent family will clearly be able to make better decisions, which will have a positive impact on their sick children.
All families deserve the same respect. Some will be wealthier than others. Some will have more education than others. Some will be more proactive in finding solutions to their children's problems, while others will be more conformist and less skilled at these tasks. But the most important thing is that we are all people. People we would like to help according to their specific needs.
Welcome! We welcome your ideas, as well as your constructive criticism, which will help us move forward appropriately.
Our medical-scientific staff:
Pogos Katunian (MD, PhD, Prof, researcher). Expert in immunology, traumatic spinal cord injuries and neurodegenerative diseases. Moscow Medical Academy, Russia.
Marco Ruggiero (MD, PhD, researcher). Molecular biologist; expert in the fields of oncology, neuroscience, immunotherapy, microbiome medicine and quantum biology. National Coalition of Independent Scholars, San Antonio, USA.
Gabor Somlyai (PhD, researcher). Molecular biologist; director of HYD LLc for Cancer Research and Drug Development, Budapest, Hungary.
Andrew and Alexander Fingelkurts (PhDs, researchers). Neuroscientists; experts in psychophysiology, consciousness and Selfhood. BM-Science – Brain and Mind Technologies Research Centre. Espoo, Finland.
Georg Stommel (PhD, researcher). Biologist; Scientific department of Dyckerhoff Pharma GmbH, Köln, Germany
Ted Ebendal (PhD, Prof. emeritus, researcher). Department of Neuroscience, Uppsala University, Sweden.