The mission of Jenna & Patrick’s Foundation of Hope is to support and promote research, to find a cure or treatment for Cystinosis, and provide support to affected individuals and families.
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.” Bylaws were drafted and a board of directors was selected. At full speed ahead our first fundraiser, Chip-In-Fore Charity, raised an overwhelming $185,000 in June of 2006. The foundation is determined to raise funds that will help to continue to provide grants to a group of doctors who have dedicated their careers to the study of Cystinosis.