Jake Krahe's Story
In 2008, our son Jake Krahe was diagnosed with cystinosis, a rare metabolic disease that affects approximately 500 children and young adults in the United States. Cystinosis causes the amino acid cystine to accumulate in the cells of the body, slowly destroying all major organs including the kidneys, liver, eyes, muscles & brain.
The Cystinosis Research Foundation (CRF) was founded in 2003 with the sole purpose of raising funds to find better treatments and ultimately a cure for cystinosis. As federal funding for research on a rare disease is limited, CRF dedicates 100% of all donations directly to cystinosis research. Working with renowned physicians and scientists, CRF has been instrumental in the development of improved treatments, including Jake’s new medication, Procysbi, which slows the progression of cystinosis.
Amy & Jeremy, Jake & Austin Krahe