Investing in Hope
After witnessing the effects of cognitive disorders in their family, the Maurins hope to improve the quality of care for future patients
Lillian & Jimmy Maurin with their dog Louie
Brain health was not something Lillian Maurin spent much, if any, time thinking about for most of her life — until suddenly, it was the only thing on her mind.
Over the course of the past 11 years, Lillian has watched both of her parents suffer from and succumb to neurological illnesses — her father of Alzheimer’s at age 88, and her mother of vascular dementia 10 years later, at age 95. “My mom suffered so much watching my dad, and I feel that after he finally died, that affected her,” said Lillian. “They had been married for 64 years.”
And still, Lillian continues to confront the reality and consequences of cognitive diseases today. For the past decade, her younger sister has been fighting her own battle with early onset Alzheimer’s, which began during her late 50s.
“There is no way to explain how it has affected my sister’s family,” she said. “Her husband took early retirement to help her. They have 10 grandchildren who will never really know their grandmother
and what a special person she is.” With such an intimate awareness of neurological illness and its devastating effects on a family, Lillian said she wants to take every measure possible to prevent, detect and respond to the threat that is dementia and Alzheimer’s.
She and her siblings, along with all of their children, have undergone genetic testing to determine if any of them possess the genes linked to the diseases her parents and sister suffered from — and learned that a few of them do, including Lillian’s youngest daughter. When considering ways to most effectively fight the disease that had already claimed so many happy moments and special people in her life, Lillian turned to Ochsner’s new Brain Health Cognitive Disorders Program. She knew that she couldn’t get back what she had already lost, but there was still hope for future patients: perhaps she could be a part of finding a cure, and if not, then she could at least make the experience easier for families going through the same situation.
“We met with the doctors and
were very impressed at the things they are trying to accomplish,” she said. “If we can help them with opportunities for researching a cure, and also just help other families, we think that’s wonderful.”
The Brain Health Cognitive Disorders Program is working to streamline and improve access to timely dementia diagnosis through interdisciplinary approaches, engaging in cutting edge research studies around dementia care through tele-health and other technologies — in addition to exploring ways to promote brain health in younger populations to reduce dementia risk later in life.
Over the past year, Lillian and her husband Jimmy have donated $500,000 to help fund the program, a donation that improves the quality of care for patients with Alzheimer’s disease and helps alleviate the negative impact the disease has on families, according to Robert John Sawyer, MD, co-director of the program.
“Every day, the Maurins’ gift helps us to improve our dementia care and provides relief for families in crisis who are often not reimbursed by insurance companies or Medicare,” Dr. Margolin said.
The System Chair of Neurology Richard Zweifler, MD said that this program is one fueled by innovation — and innovation requires an investment to prove its value.
“We couldn’t do any of this work without the generous support of donors like the Maurins,” Dr. Zweifler said. “And it’s important work. Neurological disorders affect such a high proportion of the population today. Many of them, especially the degenerative disorders, are becoming more prevalent as the population ages, and they will only become more and more common. When you combine common diseases with high disability, it should certainly get anybody’s attention.”
For Lillian, the work being done brings exciting prospects for a better future, but it also helps her to understand the inconceivable intricacies of the ill mind, and to learn even small ways to make a difference in her sister’s remaining years.
“Did you know that bodily contact helps? Feeling, touching. Every once in a while, I’ll go to see my sister, and I’ll just hold her hand and talk to her,” Lillian said. “It all just gives me great hope.”
If you would like to support innovations in neuroscience, please visit ochsner.org/ brainhealth or contact Lucy King, Director of Development, at firstname.lastname@example.org.