ALMY foundation is a non-profit organization that aims to promote the finding of therapy to an orphan disease – CONDBA, caused by a mutation in the UBTF gene.
The foundation that was established on the initiative of Adi Goldenberg-Mejean, strives to raise awareness to rare diseases and raise funds for the development of a multidisciplinary scientific-medical model of research, believing rare diseases need a unique model of collaboration in order to promote the finding of cure.
Our vision and goal is to promote the development of an interdisciplinary model of research, in order to find therapy for CONDBA disease and other orphan diseases.
According to estimation there are in Israel about 500.000 patients who suffer from rare diseases, and more who suffer from complex diseases.
In the USA and Europe there are 20-30 million patients.
Due to the rarity of these diseases there is little research or interest of the pharmaceutical companies thus they remain orphan, and the patients, many of which are children , fall between the cracks in terms of accurate diagnosis and treatment.
When Elya was born everything looked good, "normal", they call it. A sweet, pleasant baby – a wonder. I remember she talked long before she walked.
At about age 3.5, some of her movements seemed a bit awkward, but alongside that she memorized entire texts of books, had a good sense of humor and positive to her environment. It was fun to go to stores with her knowing she would not touch, not knock down or break things. She enjoyed meeting with other kids, give up easily a toy and was not pushy. It was fun to sit with her in a cafe and I was already fantasizing how, when she grew up, we would walk and laugh and talk about matters of importance and feel on the top of the world.
Our dearest Lilley, our hearts so ache with the loss of you and you are intensely missed, every single second, of every single day. But know that your beautiful, loving soul, that graced our lives for 19 short years, taught us the enormity and power of unconditional love, compassion, acceptance and joy. Such incredible gifts that we now carry with us and will try to share and pay forward into this world of ours. We hold you in our hearts with unending love and tenderness and know that your sparkling light shines on.
Joan Higham Garlow
Elya's only hope and that of millions of other children around the world who suffer from rare diseases is private initiative and funding.
Your donation will be directed to support leading minds and hearts, from the best universities, labs, and hospitals, who agreed to join this journey, we hope to extend the circle of investigation and develop simple and promising methods to bring healing and ease to the dis-ease.