What is the Sandhoff disease?
Sandhoff disease is a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.
The most common and severe form of Sandhoff disease becomes apparent in infancy. Infants with this disorder typically appear normal until the age of 3 to 6 months, when their development slows and muscles used for movement weaken. Affected infants lose motor skills such as turning over, sitting, and crawling. They also develop an exaggerated startle reaction to loud noises. As the disease progresses, children with Sandhoff disease experience seizures, vision and hearing loss, intellectual disability, and paralysis. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. Some affected children also have enlarged organs (organomegaly) or bone abnormalities. Children with the severe infantile form of Sandhoff disease usually live only into early childhood.
What do you do with the money from the art sales?
Everything goes to the research or to buy new equipment for Mattia's hospital, 100% of it.
The 2013 was dedicated to the battle to have access to the experimental Stamina therapy (stem-cell research teraphies for babies and adults affected of lethal diseases), supported through the Committee Campania pro Stamina. To ensure that our Mattia would have had access to the treatment we have incurred in legal fees and a lot of travelling expenses (as we have to move with a lot of medical machinery!)
Our future goals of 2014 are:
- buy materials for the Hospital Policlinico Federico II of Naples that has always helped us with Mattia. Due to government's cuts to health system, the Hospital is facing a terrible crisis, due to the scarcity of resources.
-Help other families in economic need with patients with similar conditions to the Sandhoof disease
-Support the Committee Campania pro Stamina in order to assure the therapy to all the patients in need.
How can I know that my art or my money really goes to the research?
On our blog section we have been posting donations receipts and you can see pictures of all the shows we organized.
Do you accept orders placed outside of the US?
We sure do!
How long will it take to receive my order?
Once shipped most domestic orders take anywhere from 2 to 10 business days to arrive depending on the efficiency of your local postal service. International shipping delivery times may vary between 2 and 12 weeks
ringzhaoshi
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