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JENNA AND PATRICKS FOUNDATION OF HOPE's Fundraiser:

Run for Jenna and Patrick

JENNA AND PATRICKS FOUNDATION OF HOPE's Photo

THE STORY:

On March 30, 2006 Jenna and Patrick were diagnosed with Cystinosis.  Family and friends had not heard of this disease before.  After meeting with doctors, spending countless hours researching on the internet, and speaking with other families who have been afflicted with Cystinosis, Jenna and Patrick’s parents discovered their children have a rare metabolic disease, a condition that has affected about 500 people in the United States. It is an “orphan disease,” which means it has not been adopted by the pharmaceutical industry because it is so rare, and there is no monetary incentive to make and market new medications to treat or prevent it. Jenna and Patrick’s parents were concerned about the lack of funds for medical research, and knew there was little hope for their children without research. So they decided to form a foundation called “Jenna & Patrick’s Foundation of Hope, Inc.”  

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