VILLARA CAPITAL CUP 2022
Dear Family, Friends and Colleagues:
After 17 years of fundraising to end Cystinosis, we are still at it, and we appreciate our supportive community more than ever. Patrick and Jenna are beginning their senior year of high school this week. They are still looking toward kidney transplants, a lifetime of irritating medications, and the gradual, devastating decline in health that are hallmarks of Cystinosis. They hope to participate in stem cell and gene therapy trials in years ahead, but do not currently meet the qualification criteria for these studies.
Teresa and I recognize how much our children and the world around us have changed. We acknowledge the need to go about fundraising differently, but we still feel a deep responsibility to do our part to find improved treatments for our children and so many others. Research is miraculous, yet slow, tedious, and costly!
This year, we are taking ONE SWING at it! We are GOING ALL IN on the Capital Cup Charity Golf Tournament and our friend and participant Shannon Bell of NorCal Beverage. The Capital Cup, which will take place October 7-9, was uniquely created to support multiple charities with ONE three-day golf tournament. Each player chooses a cause that is meaningful to them, calls on their community for support, and passes 100% of funds raised on to their charity: no overhead, no event fees.
We have made the decision to forego a SWING golf tournament this year and GO ALL IN on Shannon and her remarkable choice to support JPFH. Any funds that are earmarked for JPFH and our annual Swing & Bling events are best used now! After 6 years of the Capital Cup, and an annual raise averaging $55,000, we are eager to see if we can double it! Please join us in our efforts!
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
September 2020
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.