Jenna & Patrick’s Foundation of Hope
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.
For an update on Cystinosis Research and how your past contributions are at work, please look below. There is so much happening in the world of medicine, and in the world of cystinosis specifically, that is cutting edge and hope-giving! We are closer than ever to an FDA-approved cure for cystinosis and we are grateful for your continued support.
The Partington Family
CYSTINOSIS RESEARCH UPDATE
The FDA stem cell trial is currently in phase one. There will be six patients total in phase one. Jordan, patient #1 is doing well. At nearly a year post-transplant, he remains off of his previously life-saving medications and is doing remarkably well, (he might say he “is cured”). In spite of the pandemic, the study is moving along (very carefully and safely). Click below for more details.
The Cystinosis Research Foundation Scientific Review Board recently approved eleven new grants, four research study extensions and one grant for equipment totaling over $2.6 million in new research projects.
How You Can Help!
From monetary donations, donation of goods & services, volunteering and more, JPFH appreciates everything our community does to help our cause. We strive to fund research, raise awareness of Cystinosis and foster hope in our quest to find a cure.