In February 2005, Tina was diagnosed with Cystinosis. Our lives were forever changed. On the outside Tina looks like the typical fourteen year old, but on the inside her body is slowly deteriorating.
Cystinosis is a rare and complex 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. Cystine accumulation also causes severe complications--including, but not limited to, muscle wasting, blindness, difficulty swallowing, neurological deterioration, decreased pulmonary function, diabetes, and hypothyroidism. In essence, cystine accumulates in each and every cell of the body, creating a head-to-toe hazard.
In 2008, Tina's Hope for a Cure nonprofit foundation was started by family and friends. We are in partnership with the Cystinosis Research Foundation, the largest fund provider of research in the world. Together, we have helped fund better treatments and a potential cure is on the horizon. We are hopeful that some day soon Tina and all her Cystinosis friends will be cured of this life threatening disease.
All costs are underwritten, ensuring that every dollar raised goes directly into the hands of researchers.
All grants are made through the Cystinosis Research Foundation's Scientific Review Board.
Non-profit Organization pursuant to Section 501(c)(3) Federal Tax ID #80-0283749