Cystinosis Research Foundation Announces Board of Directors

May 15, 2007

In a move to strengthen its expertise, influence and advocacy efforts aimed at funding research for new treatments and a cure for cystinosis, a rare and fatal disease, the Cystinosis Research Foundation of Irvine, Calif., established an 11-member board of directors. The new directors include one of the disease’s leading medical researchers and the parents of a set of twins who were diagnosed with the illness at 15 months old.

Only about 2,000 people worldwide, mostly children, are afflicted with the 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. Over a period of years, the cystine damages various organs, including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Other complications occur that include muscle wasting and difficulty swallowing. As the cystine accumulates in the cells, the various organs slowly deteriorate. There is no cure and life expectancy does not extend beyond the early 30s.

Jeff and Nancy Stack of Corona del Mar, Calif., formed the CRF in 2003 and have served as the foundation’s trustees. Their daughter Natalie, 16, is a cystinosis sufferer. Since the CRF’s formation, it has raised more than $4 million, which is spent entirely on funding for numerous scientific, clinical and bench research studies in the United States and Europe.

Board of Directors

Stack, who is an owner of the SARES●REGIS Group, an Irvine, Calif., a leading regional commercial and residential real estate development and management company, was elected chairman of the board and CRF president. Nancy Stack, an attorney, was elected as the foundation’s secretary. Donald Solsby, president of Plaza Bank of Irvine, is treasurer.

Dr. Jerry Schneider of the University of California at San Diego, who is recognized as the “grandfather of cystinosis research,” was elected to the board of directors.

Also elected to the CRF board are Kevin and Teresa Partington of Sacramento, Calif. Last year their 2-year-old twins, Jenna and Patrick, were diagnosed with cystinosis. Kevin Partington is a senior vice president of Colliers Seeley in Sacramento.

Others elected to the board are: Renee Carter of Coto de Caza; David Christensen, vice president of Time Warner Cable, Englewood, Col.; John Hagestad of Newport Beach and a managing director of the SARES●REGIS Group; Michael Hayde, chief executive officer of Western National Group, and his wife, Lynette, of Newport Beach, Calif., and Kris Elftmann, president of the Noelle Marketing Group, Santa Ana, Calif.