Posts by admin
Our Escape to the City
Dear Friends, Last year was a rough one. My cancer treatment and related risk-reducing surgery, and Jenna’s surgery on both knees in December had us confined to the house for months. Kevin suggested we get out of town, and through a (very generous) friend, we had access to an apartment in San Francisco. Kevin, Patrick, Jenna and I escaped for three…
Read MoreSwing & Bling #7
SWING & BLING #7 SAVE THE DATE! October 13th & 14th, 2017 Swing Golf Tournament is scheduled for Friday, October 13th, 2017. Bling Auction & Dinner is scheduled for Saturday, October 14th, 2017. 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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