Dear friends of Jenna & Patrick’s Foundation of Hope,
This website is dedicated to Jenna and Patrick Partington and every child living with the disease Cystinosis. We are happy to have this space to spread awareness about Cystinosis, let you know what we are doing in our quest for better treatments, and to share stories about Jenna and Patrick and other children with cystinosis. Every few months we hear of a child being diagnosed with this devastating disease, and we hope the information, photos and hopeful news here bring enlightenment and peace of mind to families who have typed “cystinosis” into their search engine for the first time.
As you browse this site you will notice a number of links to the Cystinosis Research Foundation website. We are proud of our partnership with this well established organization. Their dedication to aggressive research of Cystinosis is driven by the wish of a 17 year old girl named Natalie. Her dream of “having my disease go away forever” has become our dream. Our mission is to create awareness of this rare disease and continue to raise funds that will be directed to the doctors and researchers who have dedicated their careers to treating Cystinosis.