Anonymous Donor Issues Unprecedented $1-Million Challenge Grant
April 15, 2009
Anonymous Donor Issues Unprecedented $1-Million
Challenge Grant To Cystinosis Research Foundation
A remarkable and unprecedented donation has been made to the Cystinosis Research Foundation. An anonymous benefactor has pledged to give $1 million in the form of a challenge grant to the CRF of Irvine, Calif., which is funding research studies focused on finding a cure for the deadly metabolic disease that afflicts about 500 persons, mostly children, in North America.
“We are astonished to receive a pledge of this size. This is an amazing opportunity for every dollar donated to be matched. If we can attract $1 million in donations to meet this challenge, I believe it will result in a CRF fundraising record. This will help fund research to bring us even closer to finding a cure for this devastating genetic disease,” said Nancy Stack, president and co-founder of the CRF.
Stack, who says the $1-million pledge was made by a donor in Southern California’s Orange County, reports that current CRF-funded scientific research already has developed a better treatment and is on a path to finding a cure within five years.
“We believe with our researchers’ plan that in five years we’ll have a cure for cystinosis,” she said.
Cystinosis is a rare genetic, metabolic and slowly fatal disease. 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.
Cystinosis www.cystinosisresearch.org [genetic disease] slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. There is a medicine that prolongs the patients’ lives, but there is no cure. Almost all sufferers succumb before 40 years old.
The CRF is the world’s largest non-profit provider of funds for cystinosis research. Because the cost of the foundation’s operations and fundraising activities is privately underwritten, 100 percent of all donations directly support medical research dedicated to finding improved treatments and a cure for cystinosis.
The challenge grant comes weeks ahead of the CRF’s eighth annual fundraiser called Natalie’s Wish, which is named for 18-year-old Natalie Stack, who was diagnosed with cystinosis as an infant. This year’s fundraising banquet, featuring bestselling author Mitch Albom, is planned for May 8 at the Balboa Bay Club in Newport Beach, Calif.
Tax deductible sponsorships for the banquet and tickets at $250 are available. Albom is the author of all-time bestselling memoir “Tuesdays With Morrie” and nationally acclaimed newspaper columnist and radio and television personality.
