There was a beautiful article written that I wanted to share: http://natalieswish.org/files/MHPFeatureMay2011.pdf

After Landon was diagnosed, Jimmy and I immediately began to do research and wanted to connect with other families and individuals affected by Cystinosis. I posted on a Cystinosis board and Nancy Stack was the first to respond to me only hours later. Another incredible woman, Denice, responded too which gave us a glimpse of the incredible support that we would find.

We also just learned that a pharmaceutical company, studying the extended cycle form of Cystagon (the drug that treats Cystinosis) just announced that this drug is safe and that patients can take a lower dose than Cystagon. This means that Landon, and others with Cystinosis, will only have to take the drug every 12 hours rather than every 6 hours. This means that at some point, we won't have to wake in the middle of the night to give the drug to him. Woohoo! If you are interested in looking at the research, feel free.. http://www.checkorphan.org/grid/news/treatment/raptor-pharmaceutical-meets-primary-endpoint-in-its-phase-3-clinical-trial-of-dr-cysteamine-for-nephropathic-cystinosis

This is why fundraising will be so important to our family.. We share Natalie's wish in that a cure is found in Landon's life time!