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Group DescriptionFormed in 2003, the Cystinosis Research Foundation’s (CRF) mission is two-fold and focused; to find better treatments and a cure for cystinosis.
Jeff and Nancy Stack are the parents of a child with a rare, metabolic disease called cystinosis. On the eve of their daughter Natalie's twelfth birthday, she made a wish that no child should ever have to make; "to have my disease go away forever". Her wish, scribbled on a napkin because she was embarrassed to say the wish out loud, catapulted the Stacks into action. They had to share her story and formed a non-profit foundation called the Cystinosis Research Foundation.
Cystinosis is a rare, genetic, metabolic disease that slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. There is a medicine that prolongs the children’s lives, but there is no cure.
Prior to the establishment of the CRF, cystinosis research studies were few and far between and cystinosis clinical research and multi-year research studies were rare.
Today, the CRF has raised more than $11 million for research and fellowships in six different countries making CRF the largest fund provider of cystinosis research in the world. Every day, researchers around the globe are working to find a cure for cystinosis.
The Cystinosis Research Foundation is grateful to all who have supported its efforts to make Natalie’s wish become a reality. If you would like to help in our quest to find a cure for cystinosis and give hope to the families living with this devastating disease, please visit www.cystinosisresearch.org.
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