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Swing & Bling #9
SWING & BLING #9 SAVE THE DATE! Thursday, October 3rd, 2019 Swing Golf Tournament is scheduled for Thursday, October 3rd, 2019. CLICK HERE FOR SPONSORSHIP OPPORTUNITIES & DETAILS
Read MoreNew Study at Stanford
Families from all over the country are traveling to Stanford for a new study on Cystinosis, a rare and incurable disease. Read Full Story
Read MoreJenna, Patrick & Tucker
Parental Quest Bears Fruit in a Kidney Disease Treatment
Parental Quest Bears Fruit in a Kidney Disease Treatment Posted on Tuesday, May 21, 2013 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.
Read MoreThe Partington’s
The Partington’s Posted on Tuesday, May 21, 2013 The Partington’s 2013 HD Video CLICK HERE TO VIEW FULL VIDEO
Read MoreNew drug offers hope for cystinosis
New drug offers hope for cystinosis Posted on Tuesday, May 21, 2013 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…
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