VILLARA CAPITAL CUP 2021

Dear Supporters of Jenna & Patrick’s Foundation of Hope, 

We are honored that our good friend Shannon Bell from Nor-Cal Beverage has selected Jenna & Patrick’s Foundation of Hope as her charity of choice for this years Villara Capital Cup Golf Tournament on September 24-26, 2021.

For our committed supporters who have been a part of this journey for years: the clinical trial to test a cure for Cystinosis is working!  All three FDA clinical trial patients have cystine levels low enough to no longer need cysteamine (the corrosive drug Jenna and Patrick must take every 12 hours).  Jenna and Patrick have a couple years and a couple hurdles to clear before they may be candidates for this stem cell and gene therapy treatment.  Both of them will receive kidney transplants in the next year, which will have them in good health and ready to withstand the side effects of the cutting edge treatment.  In the meantime, over 30 other important research projects are under way, addressing complications relating to the corneas, bones, muscles and brains of those affected by Cystinosis. It is so important to keep the research going!

It has been a difficult climate for fundraising.  We are grateful for Shannon’s efforts on behalf of the Villara Capital Cup and the JPFH Charity, which continues to be committed to continued research and better treatments for Cystinosis.

As always, thank you for your continued support!

Kevin Partington
President, Jenna & Patrick’s Foundation of Hope

Shannon’s Team
Donation Page:

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.