For two decades, UC Irvine has been on the forefront of Huntingtonâs disease research and care, and Frances SaldaĂ±a is working to keep it that way.
By day, she manages the Corporate Partners program for The Paul Merage School of Business. But SaldaĂ±a 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. SaldaĂ±a has lost a husband and her younger daughter to Huntingtonâs disease, and her other two children are in the late stages of it. âHD is cruel and unfair,â she says. âAnd we have to end it.â
So along with friends Jean Abdalla and Linda Pimental, who have also lost family members to the disease, SaldaĂ±a founded HD CARE to raise awareness and funds for UC Irvine research and clinical care. Itâs an official support group of the campusâs Institute for Memory Impairments & Neurological Disorders (UCI MIND), which explores new research and treatments for a spectrum of neurodegenerative diseases, including Alzheimerâs and Parkinsonâs.
âFrances is a tireless promoter of HD research and care, and her enthusiasm is infectious,â says Leslie Thompson, a UC Irvine professor of psychiatry & human behavior and neurobiology & behavior whoâs recognized as one of the worldâs pre-eminent HD researchers. âHer impact is profound.â
Huntingtonâs disease â a progressive, genetic brain disorder â causes the degeneration of neurons in certain areas of the brain. Itâs 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 SaldaĂ±a 15 years ago when SaldaĂ±aâs daughter Marie first showed signs of the disease.
Since then, theyâve been a dynamic duo. Thompson and her campus colleagues â including researchers J. Lawrence Marsh, Joan Steffan and Malcolm Casale â have made key discoveries revealing the underlying genetic mechanisms of HD, and sheâs currently using stem cells to explore treatments and cures. Driving them is SaldaĂ±a, who by some estimates has helped raise $1 million to aid UC Irvine research over the years.
âFrances inspires me daily,â says Thompson, who has a framed photo of SaldaĂ±aâs children on her desk. âWe in HD research are working for the families. We feel a sense of urgency.â
SaldaĂ±a also assisted with the creation of the Huntingtonâs Disease Clinic at UC Irvineâs Gottschalk Medical Plaza. Directed by neurologist Dr. Neal Hermanowicz â who manages the movement disorders program for UC Irvine Health â 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. âSounds by the Seaâ will feature live jazz, fine chocolates, wine and small bites, but its purpose is to highlight the need to support UC Irvineâs 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.
SaldaĂ±a hopes âSounds by the Seaâ will be a springboard for HD CAREâs 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 â showing them how far science has come in 20 years.
âI wouldnât have hope unless I knew how much the researchers here are doing,â SaldaĂ±a says. âAt 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.â