10th and Final Fun Run
April 23, 2016
BENEFITING: Cystinosis Research Network, Inc.
EVENT DATE: May 01, 2016
Cystinosis is a rare, genetic, metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. The build-up of cystine in the cells slowly and eventually destroys all major organs of the body. Although medication is available to control the symptoms of this insidious disease, Cystinosis remains incurable.
Kacy was diagnosed in 2006 at 4 years old. She is now 13 years old. May, 2015 she received a kidney transplant from Tim (dad). Kacy lives a relatively normal life, but her days are not easy ones. They are filled with medication dosing every 8 hours (35 pills a day), eyedrops 6-8 times a day, doctor visits, and while she now has a well functioning kidney she also lives with a suppressed immune system.
We partnered with CRN soon after diagnosis and are so grateful for the research they fund. In the last 10 years she has benefited from the medical breakthroughs that have occurred. CRN became our lifeline after diagnosis and continues to be a comfort for us as we continue this fight for our daughter as she grows through adolescence and into adulthood. She has a HUGE life in front of her and it is our duty to mae it the best life it can be.
CRN is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communities about Cystinosis. 100% of your financial contribution funds important research that not only improves the quality of life for patients like Kacy, but keeps us hopeful for a cure in her lifetime.