SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

April 01, 2010 16:43 ET

Singer-Songwriter John Ondrasik to Headline Annual Natalie's Wish Fundraiser for Cystinosis in Newport Beach

IRVINE, CA--(Marketwire - April 1, 2010) -  At a pivotal time in the fight to cure a rare, devastating illness, the Cystinosis Research Foundation will hold its annual Natalie's Wish fundraising event this month, featuring Platinum singer-songwriter John Ondrasik, known as Five for Fighting, whose hits include Grammy nominated "Superman" and "100 Years."

"We look forward to presenting John Ondrasik as our headliner this year. In addition to John's personal support of a number of charities and U.S. military personnel, I believe his ability to express heartfelt emotions in his music and lyrics will connect with our guests who are dedicated to helping Natalie's Wish come true. We have reached a crucial point in time in our efforts to find a cure for cystinosis," said Nancy Stack, co-founder and trustee of the Cystinosis Research Foundation.

The theme of the ninth annual Natalie's Wish event is "The Time Is Now... It Is Time To Find A Cure." The event is set for Friday, April 30, at the Balboa Bay Club in Newport Beach, Calif. Stack said the theme "reflects more than seven years of targeted research culminating in dramatically improved medications and progress with breakthrough stem-cell and gene-therapy research."

"Every day, CRF-funded researchers around the world get closer to unlocking the mysteries of this terrible disease. We are at the threshold of a cure that we believe will come within three to five years," Stack said.

Cystinosis is a rare genetic, metabolic and fatal disease that afflicts about 500 people, mostly children, in the United States and 2,000 worldwide. CRF is the world's largest provider of funds for cystinosis research.

Cystinosis gradually destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. In patients with cystinosis, the amino acid cystine accumulates in the tissue due to the inability of the body to transport cystine out of the cell. This causes development of crystals, resulting in early cell death. There is a drug, cysteamine, that can prolong the patient's life, but there is no cure. Almost all sufferers succumb before 40 years old.

Because the foundation's cost of operations and of fundraising activities is privately underwritten, 100 percent of all donations directly support medical research dedicated to finding improved treatments and a cure for cystinosis.

Since its formation in 2003, the CRF has funded more than $10.8 million in cystinosis research. Twice a year the CRF puts out worldwide calls to the scientific community for research proposals. Currently, the CRF is funding 41 studies including 10 research fellows in the United States, Canada, France, Italy, Belgium, Germany and The Netherlands. Last year's Natalie's Wish fundraiser garnered $2.3 million in contributions.

Ondrasik was born in the San Fernando Valley of Los Angeles and was raised in a musical family. He writes deeply emotional music with social messages, invoking the human spirit. His music has been featured in several films, including "The Blind Side," whose star, Sandra Bullock, recently earned an Oscar. To many, "Superman" became an anthem for national healing after the Sept. 11, 2001 terrorist attacks. He has recorded five albums, including "America Town" and "The Battle For Everything," which were certified Platinum.

A longtime supporter of U.S. troops, Ondrasik has performed on USO/Armed Forces Entertainment tours in Hawaii, Guam, Japan and Guantanamo Bay. He also conceived and produced "For The Troops" and "For The Troops 2," which are compilations of superstar recording artists, including Billy Joel, Brooks & Dunn, Josh Groban and Melissa Etheridge, Keith Urban, Chris Daughtry and Roy Orbison. The albums were made available free to active-duty members of the armed forces. Ondrasik is producing "For The Troops III," which will feature comedians.

For more information about Natalie's Wish and the Cystinosis Research Foundation of Irvine, Calif., call Zoe Solsby at (949) 223-7610 or visit www.cystinosisresearch.org.

Contact Information

  • Contact:
    Zoe Solsby, CRF
    (949) 223-7610
    Art Barrett
    (714) 602-6021