VILLARA CAPITAL CUP 2023
Dear Family, Friends and Colleagues:
Greetings to supporters of Jenna & Patrick’s Foundation of Hope!
Our dear friend, Shannon Bell of NorCal Beverage company, is preparing to play in her eighth Capital Cup Golf event to raise funds for the JPFH charity, and Jenna and Patrick are preparing to head off to college! We are thrilled to see the kids persevering, despite cystinosis. Jenna and Patrick are still looking toward kidney transplants, a lifetime of irritating medications (56 pills per day!), and the gradual, devastating decline in health that are hallmarks of their incurable genetic disease. Both kids hope to qualify and participate in stem cell and gene therapy trials in the years ahead. Until then, they move forward in their own unique ways.
We are once again GOING ALL IN on the Capital Cup of Sacramento Charity Golf Tournament, September 14-17, 2023. This annual fundraising event was uniquely created to support multiple charities with ONE three-day golf tournament. Each of the 36 participants is a Sacramento business leader or CEO, who has chosen a cause that is meaningful to them, calls on their community for support, and passes 100% of funds raised on to their charity of choice: no overhead, no event fees.
The Capital Cup has become the go-to fundraising event for the JPFH Charity. With her participation, Shannon raises critical research dollars while helping the broader Sacramento community understand cystinosis. It is about so much more than Jenna and Patrick, 18-year-old twins, that inspired JPFH, which is changing the lives of people with cystinosis and other genetic diseases. Jenna & Patrick’s Foundation of Hope is proud to work closely with the Cystinosis Research Foundation. To learn more about what is happening in cystinosis research and to better understand how your donations are being used, please visit https://www.cystinosisresearch.org/.
Thank you for participating and helping Shannon raise over 100K this year while creating awareness about the great work of Jenna & Patrick’s Foundation of Hope!
Thank you,
Kevin Partington
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.
Sincerely,
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.
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.