ALMY foundation (OLME) is a non-profit, non-governmental organization that aims to promote the research of rare orphan diseases and their cure.
ALMY was founded by Adi Goldenberg, friends and family in order to find a cure for children who suffer from a progressive neurodegenerative disease caused by a rare mutation Glu210Lys in the gene UBTF - CONDBA.
Elya, Adi’s daughter was diagnosed recently, after 16 years of searching with this disease.
In August 2017 almost 2 years after it was first found independently by both prof El-Peleg and Prof Gil Atzmon it was Proved to be the cause of the disease. Based on this thread, we are gathering our resources in ALMY foundation.
The UBTF discovery gave us the hope and power to initiate a research for a medicinal solution.
There is no information or knowledge on how to treat this degenerative disease. The medical community is helpless in confronting orphan diseases.
There is a saying in Hebrew: המציל נפש אחת כאילו הציל עולם ומלואו
The simultaneous translation is - If you can save One soul, it is as if the whole world is saved.
At its core, there is the love and compassion to the one, that equals the Many.
In this journey, I discovered that science and practical medicine have very little communication and that science and technology have a lot more to offer to society than we get to know and are benefited from.
In many orphan diseases, the causalistic procedures do not result in a clearly defined result of concurring causal chain processes, which means that a new method of investigation has to be applied,
This gave birth to the idea of creating a unique model of an interdisciplinary roundtable of scientists and physicians who would not fear a challenge even though the challenge itself is yet obscure.
A breakthrough in the understanding of this unique disease will have an immense impact on the understanding of other neurodegenerative and autoimmune diseases, rare and common, as it has a huge range of symptoms resembling many diseases.
This vision has sprouted in the first meeting between leading scientists and physicians which took place on March 9th, 2018 at Blavatnik Center in TAU ( see in Events).
Founder of ALMY with her daughter Elya
Click here to read more about the Story of Adi and her daughter Elya