Help Chance for Chase

Chance for Chase

Fort Myers, Florida

Cause Description:
Chase Chodakowsy's family is trying to raise money to help with his battle against cystinosis. Please show your support and help them out Cystinosis is an "orphan" disease with about 500 people, mostly children, stricken with the disease in the United States and approximately 2,000 worldwide. Cystinosis is a 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. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles, central nervous system and the brain. With such a rare disease affecting such a small population, research money is scarce to nonexistent. Cystinosis is an autosomal recessive genetic disease which means that both parents are carriers of the abnormal gene that leads to this condition. The parents do not exhibit any of the symptoms of Cystinosis. There is no cure for Cystinosis, the only available treatment is cysteamine. Cysteamine is the only drug that slows the progression of Cystinosis by removing the cystine from the cells. Cysteamine is a cystine depleting agent that helps to lower cystine levels in the cells. In 1994, the new product in a capsule form, called Cystagon was available for use. Unfortunately Cystagon has a very bad taste, smell and is extremely harsh on the stomach. It must be taken every six hours, every day!

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