David Radler Frances Saldaña has lost a husband and daughter to Huntington’s disease, and her two remaining children are in its late stages. “I wouldn’t have hope unless I knew how much the researchers here are doing,” she says of UCI’s groundbreaking work on the disorder.

A cause close to her heart

UCI staffer co-founds support group for Huntington’s disease research, care on campus

For two decades, UC Irvine has been on the forefront of Huntington’s disease research and care, and Frances Saldaña is working to keep it that way.

By day, she manages the Corporate Partners program for The Paul Merage School of Business. But Saldaña is better known as a focused and driven advocate for the patients and family members who must endure the terrible consequences of this incurable neurodegenerative disorder.

She shares their pain. Saldaña has lost a husband and her younger daughter to Huntington’s disease, and her other two children are in the late stages of it. “HD is cruel and unfair,” she says. “And we have to end it.”

So along with friends Jean Abdalla and Linda Pimental, who have also lost family members to the disease, Saldaña founded HD CARE to raise awareness and funds for UC Irvine research and clinical care. It’s an official support group of the campus’s Institute for Memory Impairments & Neurological Disorders (UCI MIND), which explores new research and treatments for a spectrum of neurodegenerative diseases, including Alzheimer’s and Parkinson’s.

“Frances is a tireless promoter of HD research and care, and her enthusiasm is infectious,” says Leslie Thompson, a UC Irvine professor of psychiatry & human behavior and neurobiology & behavior who’s recognized as one of the world’s pre-eminent HD researchers. “Her impact is profound.”

Huntington’s disease – a progressive, genetic brain disorder – causes the degeneration of neurons in certain areas of the brain. It’s a familial disease passed from parent to child through a genetic mutation. Symptoms include uncontrolled movements, loss of intellectual capabilities and emotional disturbances. In the U.S. alone, at least 30,000 people have HD, and more than 150,000 others have a 50 percent risk of developing it.

Thompson was part of the UC Irvine team that helped identify the HD gene in 1993, and she met Saldaña 15 years ago when Saldaña’s daughter Marie first showed signs of the disease.

Since then, they’ve been a dynamic duo. Thompson and her campus colleagues – including researchers J. Lawrence Marsh, Joan Steffan and Malcolm Casale – have made key discoveries revealing the underlying genetic mechanisms of HD, and she’s currently using stem cells to explore treatments and cures. Driving them is Saldaña, who by some estimates has helped raise $1 million to aid UC Irvine research over the years.

“Frances inspires me daily,” says Thompson, who has a framed photo of Saldaña’s children on her desk. “We in HD research are working for the families. We feel a sense of urgency.”

Saldaña also assisted with the creation of the Huntington’s Disease Clinic at UC Irvine’s Gottschalk Medical Plaza. Directed by neurologist Dr. Neal Hermanowicz – who manages the movement disorders program for UC Irvine Health – the clinic is the only one in Orange County devoted exclusively to the neurological and psychological care and support of HD patients and their families.

HD CARE is hosting its inaugural event April 20 at Hotel Laguna in Laguna Beach. “Sounds by the Sea” will feature live jazz, fine chocolates, wine and small bites, but its purpose is to highlight the need to support UC Irvine’s considerable efforts to combat and treat this disease. All proceeds from the event will go toward HD research and the HD clinic. For more information, visit the HD CARE website.

Saldaña hopes “Sounds by the Sea” will be a springboard for HD CARE’s mission of advocacy and education. She plans to follow up by inviting attendees to campus to tour the laboratories in UCI MIND and the Sue & Bill Gross Stem Cell Research Center – showing them how far science has come in 20 years.

“I wouldn’t have hope unless I knew how much the researchers here are doing,” Saldaña says. “At HD CARE, we want a treatment, a cure and care for our patients. The researchers and physicians at UC Irvine have done so much, and they deserve more support.”

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