VILLARA CAPITAL CUP 2024
Dear Family, Friends and Colleagues,
Jenna and Patrick had a successful first year away at college, and Kevin and I enjoyed a year of visits to San Francisco and Moscow, Idaho, to see how they were faring. We prepared their medications monthly and put them in the mail (with cookies!) or delivered them on our visits. They both plan to return to their respective Universities as soon as possible, but it is time for each of them to receive a kidney transplant. Last month, I dropped Jenna off to visit her brother at San Francisco State University for the weekend. I said to her as she got out of the car (only partly in jest): “Jenna, a “light” discussion with your brother would be about which of you will have a transplant first and which of you will be getting your Dad’s kidney if he’s approved to donate.” It’s such an absurd and heavy discussion to ask 19-year-old siblings to have, it felt best to handle it with humor! Three days later, I learned that Jenna would like to go first, and because of that, she’d receive Kevin’s kidney if he is approved to donate.
It is awkward to need the organs of others. Whether it’s a deceased donor or a living donor, and whether it’s my husband or my friend, it’s a frightening, vulnerable, and desperate position to find oneself in. To think that in our family of four, three will undergo major abdominal surgery in the next year…It’s a lot to process!
Our dear friend Shannon Bell has once again stepped up to participate in the Sacramento L5 Investments Capital Cup! We have included her letter below, along with the opportunity to donate to Jenna & Patrick’s Foundation of Hope, which continues to fund research in the Cystinosis community.
Love,
Teresa, Kevin, Patrick & Jenna Partington
As you may know, Kevin Partington and his wife Teresa and their twin children are dear friends of mine. Because of this, I have always been a strong supporter of Jenna & Patrick’s Foundation of Hope (https://jpfh.org/). This year, I will be participating in my 9th L5 Investments Capital Cup, a golf tournament among fellow Sacramento business leaders to raise funds for local charities and non-profits. I have chosen to support Jenna & Patrick’s Foundation of Hope to further their mission of finding better treatments for cystinosis and similar diseases and raising awareness about living kidney donation. If my team wins, Jenna & Patrick’s Foundation of Hope (https://jpfh.org/) will receive a share of the $100,000 grand prize!
Please read about Jenna and Patrick, who are the faces of this charity created to fund research into the rare genetic disease cystinosis. We also hope their need for living donor kidney transplants might inform and inspire our community to help one of 100,000 others in the United States who are in desperate need of a kidney.
Please consider contributing through my fundraising page: https://capitalcup.mightycause.com/story/Shannon-Deary-Bell2024.
All donations go directly to Jenna & Patrick’s Foundation of Hope, as well as help me win the grand prize on their behalf—with every $10,000 I raise in advance, I earn a “mulligan,” and for those of you who have seen me play, you know I need all the mulligans I can get!
Thank you for your support and generosity.
Best Regards,
Shannon-Deary-Bell
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.