Swing & Bling #4

PLEASE DO NOT DRINK & DRIVE PLEASE CALL A CAB OR USE UBER TAXI FOR SAFE TRANSPORTATION Click HERE for a preview of the auction items. Thank you again to all of our Swing & Bling #4 sponsors! Sponsor Flyer Swing #4: Presenting Sponsor – $10,000 – ABM Golf Ball Sponsor – $5,000 – Morgan Stanley Photo Sponsor – […]

How to Help

Jenna and Patrick’s Foundation of Hope is a 501(c)3 non-profit organization. Donation, sponsorship and volunteer opportunities are available to help us find a cure for cystinosis.   Sponsorship Opportunities For additional information on the Swing & Bling #4 event and the available sponsorship opportunities, please click here. Donate via Mail Jenna and Patrick’s Foundation of […]

About Cystinosis

What is Cystinosis? Cystinosis is a rare metabolic disease that affects approximately 500 people in the United States (mostly children),and about 2,000 people worldwide. This disease causes the amino acid “cystine” to accumulate in the cells of the body. Over time, the cystine damages various organs including the kidneys, liver, muscles, white blood cells, eyes, […]

The Foundation

Dear friends of Jenna & Patrick’s Foundation of Hope,
This website is dedicated to Jenna and Patrick Partington and every child living with the disease Cystinosis. We are happy to have this space to spread awareness about Cystinosis, let you know what we are doing in our quest for better treatments, and to share stories about Jenna and Patrick and other children with cystinosis. Every few months we hear of a child being diagnosed with this devastating disease, and we hope the information, photos and hopeful news here bring enlightenment and peace of mind to families who have typed “cystinosis” into their search engine for the first time.

As you browse this site you will notice a number of links to the Cystinosis Research Foundation website. We are proud of our partnership with this well established organization. Their dedication to aggressive research of Cystinosis is driven by the wish of a 17 year old girl named Natalie. Her dream of “having my disease go away forever” has become our dream. Our mission is to create awareness of this rare disease and continue to raise funds that will be directed to the doctors and researchers who have dedicated their careers to treating Cystinosis.

What is Jenna and Patrick’s Foundation of Hope?

Our Mission & History

Cystinosis Videos

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    New drug offers hope for cystinosis

    By Erin Allday May 8, 2013   Before the drug Cystagon, the parents of babies diagnosed with the rare disease cystinosis were told to take their children home and love them as best they could before they died, usually before age 10. The drug was a literal lifesaver. Except Cystagon was also a nightmare. To be […]

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    The Partington’s

    The Partington’s 2013 HD Video CLICK HERE TO VIEW FULL VIDEO

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    Parental Quest Bears Fruit in a Kidney Disease Treatment

    Nancy Stack and her daughter Natalie in Washington, where they awaited word about federal approval for Procysbi. Read the full article in the NY Times – Click Here.

  • Medical Panel Q&A on Cystinosis

    Day of Hope Cystinosis Research Foundation Family Conference, April 21, 2012 in Newport Beach, California.

  • Research Update May 2012

    On April 21, 2012 Dr. Theodore Moore, Director of the Pediatric Blood and Marrow Transplant program at UCLA David Geffen School of Medicine, presented his plan at the Day of Hope Cystinosis Research Foundation Family Conference in Newport Beach, CA for a pilot study enrolling six patients in a recently approved clinical trial to evaluate […]

  • CRF Cystinosis Video 2011

    Cystinosis research is improving the quality of life of children and adults with great results from a funded drug trial, and new research on stem cell transplantation and gene therapy brings hope that a cure is within reach.

  • Cystinosis Families Funding a Cure

    Cystinosis families from around the world are united to help fund cystinosis research.

  • CRF Cystinosis Video 2010

    Due to the research efforts led by the Cystinosis Research Foundation, people with cystinosis will soon have a better life-saving medication, and for the first time a cure is within reach.

  • CRF Cystinosis Video 2009

    An introduction into the lives of three families with children diagnosed with cystinosis and the current state of cystinosis research sponsored by the Cystinosis Research Foundation.

  • CRF Cystinosis Video 2008

    Due to the research efforts led by the Cystinosis Research Foundation, people with cystinosis will soon have a better life-saving medication, and for the first time a cure is within reach.

Chronological Posts

December 2014
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