ALMY foundation is a non profit organization that aims to promote a multidisciplinary scientific-medical model of collaboration of research and development of therapy to an orphan disease known as Childhood Onset Neurodegenerative Disease with Brain Atrophy - CONDBA - Caused by a rare mutation in the UBTF gene.
The foundation was established on the initiative of Adi Goldenberg-Magen
Who’s daughter Elya was diagnosed after 15 years of searching for the cause of her illness.
The foundation strives to raise awareness to the existence of rare disease that medicine can’t just yet meet its needs, and to raise funds in order to support and promote research, believing a rare disease needs a rare kind of model of collaboration In order to promote the finding of cure.
ADI'S & ELYA'S STORY
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 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 Europa there are 20-30 million patients
Your donation will fund initial research to find new ways to identify, treat, and cure rare diseases
SUNSHINE FOR ADDY - Christine's blog Addy's mother
Addy is a girl from the USA who suffers from the same disease as my daughter’s.
I was amazed to find Christine’s blog - Addy's mother.
We share lots of thoughts and emotions she so beautifully puts into words.
The Facebook group of those diagnosed with UBTF
CONDBA is a severe progressive neurodegenerative disorder characterized by loss of motor and cognitive skills.
Click here for the entire report
Mysterious illness receives a diagnosis
Addison Cannon, 9, of Amherst, lost her ability to speak and walk from a very aggressive deterioration in her brain that left doctors baffled.
Click here for the entire article
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.