Jenna & Patrick’s Foundation of Hope
Dear Supporters of JPFH and Villara Capital Cup,
We are thrilled to share with you that Shannon Bell is once again participating in Sacramento’s esteemed fundraising event, the Villara Capital Cup, the weekend of September 25-27, 2020. She has once again chosen Jenna & Patrick’s Foundation of Hope as her charity of choice. Shannon will compete on local golf courses for three days, playing alongside other CEO’s in the Sacramento business community, who are supporting their own charities of choice. The Capital Cup has become Sacramento’s biggest charitable event each year, and we are honored to promote the event and know that JPFH is a part of it!
We are clearly living through an unprecedented time. Listening to the news these days can be troubling, and each of us is dealing with Covid-19 and everything that relates to it in different ways, and it can be polarizing. It is a blessing to look toward the Capital Cup as an event that will once again bring people together for the greater good.
That said, thank you for supporting Shannon’s effort in the Capital Cup in any way you are able this year. 100% of proceeds raised by Shannon will be used for continued Cystinosis Research, as our charity incurs ZERO overhead expenses.
For an update on Cystinosis Research and how your past contributions are at work, please click here. 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.