Today is the day to donate and support research! We can’t be together in person, but we can celebrate our research community today and help fund groundbreaking research that will lead to new discoveries about cystinosis and new treatments. We have funded 204 studies, and as a result of our early research, we have two FDA approvals. We have made great strides but must continue our work. Every dollar raised drives our research program forward. We need your help to find a cure! https://www.cystinosisresearch.org/day-of-hope-2021/

Jenna & Patrick’s Foundation of Hope

Our Mission

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.

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

September 2020

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.

Join Us

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.