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Who we are
The Association is a group made up of dedicated persons who have decided voluntarily and unconditionally to spend their free time and energy toward a worthy cause that they feel passionate about.
These people want to achieve something better, something that can make a difference with the people that they work with help to avoid suffering and death from devastating disease
Ataxia-Telangiectasia is a very rare hereditary pediatric disease that affects one child in each 30.000-100.000 newborns. It is an autosomal recessive pathology: parents are free of symptoms but are carriers and have one possibility in four of having an affected child.
The disease begins showing symptoms during childhood, at about two or three years of age, with the difficulty of limb movement coordination (cerebellar ataxia). It progressively aggravates. The disease becomes Telangiectasia: small dilated capillaries most of which are situated in the eyes sclera and on the cutis. Moreover, a third of patients generate tumors, often lymphomas and leukemia, which represent the main death risk (second only to breathing problems).
Researchers studying this pathology proceed in various directions with the final aim of finding medicines to stop progression of this disease. However, this pathology is a somewhat rare and like other genetic disease that the pharmaceutical companies are not motivated to invest in.
Hopeful project costs are very high: a medicine scanning robot costs 400 dollars per minute, a researcher costs about $ 50.000 dollars per year and testing new substances about $ 130.000 dollars.
The first and only concern of “A-True Smile” is to subsidize valid research that will find the cure for Ataxia-Telangiectasia.