Teri Vance

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April 13, 2013
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Concert in Carson City will raise money to help fight rare disease

When it came time to choose her senior project, Emily Morris, 17, knew exactly what she would do.

“I’ve organized a benefit concert to raise money for a rare disease called cystinosis,” she explained. “The money raised will go straight to the Cystinosis Research Foundation, and that goes straight to research to try to find a cure.”

For Morris, whose cousin was diagnosed with the disease at a young age, the concert is more than just an assignment.

“This project is more personal,” she said. “That’s why I’m determined to make it a good event.”

The senior project, which has been a requirement for graduation at Carson High School since 2000, consists of three parts. It requires students to produce a research paper in an area of interest that they choose, create a related and detailed project and compile a portfolio detailing aspects of the project.

In addition to career exploration, projects often focus on personal growth or altruistic endeavors.

The final stage of the project is a student presentation to a panel of judges from the community. Lily Reedy, who coordinates the projects, said she is about 190 judges shy of the nearly 500 needed this year.

“I try to fill up all of the slots,” Reedy said.

Morris is hoping for a good turnout at her concert, Singing for Cystinosis, tonight as well. While she won’t charge admission to her show — which features her own singing as well as other local talent — she will accept donations.

Emily’s cousin Natalie was diagnosed as a baby with the rare metabolic disease in which the amino acid cystine gets into the cells, and has no transporter out. Because of the defect in transportation, the cell crystallizes, causing early cell death. Cystinosis slowly destroys organs including the kidneys, liver, eyes, muscles and brain.

With such a rare disease, affecting about 500 people in the United States, research money is scarce to nonexistent.

That’s why Natalie’s parents created the Cystinosis Research Foundation shortly after Natalie’s 12th birthday, when she wished “to have my disease go away forever.”

People with cystinosis rarely live into their late 20s, Morris said.

Her cousin is 22.

“The time is short,” she said. “That’s why there’s such a big need for this concert.”

While her cousin is nearing the end of her life expectancy, Morris is hoping funds raised will help extend it.

“The research foundation has some highly educated doctors,” she said. “Anything is possible.”

And in the meantime, Natalie is taking full advantage of the life she does have.

“She has pushed through so much,” Morris said. “She’s traveled the world. She doesn’t sit at home. She lives her life to the fullest, even with the disease and all the side-effects.”

It’s an attitude Morris tries to emulate.

“She’s motivating,” Morris said. “It makes me realize how I want to value my life.”

And she’s hoping it will encourage the community to support her concert tonight.

“It’s a really good set list, and it’s a lot of talent,” Morris said, “but It’s also for a really good cause.”

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The Nevada Appeal Updated Apr 13, 2013 03:02AM Published Apr 14, 2013 03:01AM Copyright 2013 The Nevada Appeal. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.