A Carson High senior will pull out all the musical stops with the help of some of her friends to raise awareness of a rare, genetic disease that has stricken a family member.
On Saturday April 13 at Comma Coffee, Carson City will be "Singing for Cystinosis." This is a musical showcase promoted by Carson High senior Emily Morris and a fundraiser to raise awareness of Cystinosis, an "orphan" disease with about 500 people - mostly children - stricken with it in the United States and more than 2,000 worldwide. It is a rare disease that receives little or no funding to find a cure.
Emily is no stranger to organizing, promoting, and singing for a great cause. It was a little over a year ago she organized a successful event raising funds for The World Food Program. The choice this year to raise funds and awareness for Cystinosis was an easy decision, as it is a cause close to her heart. Emily's 22-year-old cousin Natalie Stack is living with Cystinosis. Natalie along with her parents have been seeking to find a cure from the moment Natalie was diagnosed when she was just a few months old.
When Natalie turned 12 and celebrating her birthday at a dinner party, her mother asked her "what is your wish?" Natalie responded by picking up a purple crayon the hostess had left her, taking a napkin and then wrote: "To have my disease go away forever."
The music showcase is an answer to Natalie's wish, a way to educate, and donate to help find a cure, says Emily.
The facts about Cystinosis are these: it is a metabolic disease in which the amino acid cystine gets into the cells, but has no transporter out. Because of the defect in transportation, the cell crystallizes causing early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain. With such a rare disease affecting such a small population, research money is scarce to nonexistent. And yet research on complicated diseases like cystinosis often lead to advancements in other rare diseases.
The Stack family started the Cystinosis Research Foundation shortly after"Natalie's Wish." CRF has been successful in many ways, first and foremost, the research foundation has become a special way the families diagnosed can support one another, they are no longer alone. Secondly CRF has managed to grow over the years,
raising funds through private fundraisers mostly hosted by family members searching for a cure. Emily like many other family members is joining the fight.
The "Sing for Cystinosis" showcase will be held on April 13, from 6 to 8 p.m. at Comma Coffee, 312 South Carson Street, Carson City. The showcase will spotlight performers from Carson City, including Emily Morris, Kenzie Tillit, Ivan Gates, Stephanie Gansberg, and many more talented musicians and vocalists.
Although there is no cover charge required, donations large and small will be collected by two special guests attending the fundraiser, Miss Lake Tahoe Outstanding Teen Jordan Lamoreaux, and Carson City's Outstanding Teen Samantha Byassee.