On the outside Tina looks like a typical eight year old, but inside her body is slowly deteriorating. At the age of 17 months Tina was diagnosed with Cystinosis. Cystinosis is a rare metabolic disease in which the amino acid cystine gets into the cells, but has no transporter out. Because of the defect in transportation, the cell crystallizes, causing early cell death. It slowly destroys the organs in the body, including the kidney, liver, eyes, muscles, and brain. Due to the rarity of Cystinosis, affecting fewer than 500 people in the U.S. and 2,000 worldwide, there is little or no government funding for research.
We have teamed up with family and friends to start Tina's Hope for a Cure, a nonprofit foundation, to help raise money for research. We have partnered with the Cystinosis Research Foundation, the largest fund provider of Cystinosis research worldwide.All monies raised will go 100% to Cystinosis research.
Since 2003, studies have shown so much promise with better treatments and a possible cure for Tina and others who suffer from the effects of Cystinosis.
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