Foundation supports caregivers and funds research for disease

Sue and Chuck Berghoff in 2018 when they were developing their foundation to raise awareness and funds for Lewy body dementia. Morgan Hill Life file photo

By Calvin Nuttall

When Sue Berghoff received her life-changing diagnosis seven years ago, she and her husband, Chuck Berghoff, were shocked to discover how little is known about Lewy body dementia, despite its relatively common frequency of occurrence.

Chuck and fellow board members of the Susan and Charles Berghoff Foundation spoke at the June 6 Morgan Hill Chamber of Commerce monthly breakfast about their mission to educate people about the progressive neurodegenerative disease.

“When my wife, Sue, was diagnosed with Lewy body dementia in 2017, she insisted we find ways of doing things to help others,” Chuck said. “Her desire to make a difference has become a daily inspiration, because we’re at a point where we’re making impacts every day.”

Lewy body dementia (LBD), a progressive brain disorder affecting more than one million Americans, has been identified as one of the most common causes of dementia, according to a recent study published in the Journal of Neurological Disorders.

Researchers have discovered LBD is caused by the abnormal accumulation of a protein called alpha-synuclein in the brain. These clumps, known as Lewy bodies, disrupt the normal functioning of brain chemicals, leading to a wide range of symptoms that can significantly impact an individual’s quality of life.

Among the most striking findings is the prevalence of visual hallucinations, where patients report seeing things that are not actually present. Patients can experience significant fluctuations in concentration, attention, alertness, and wakefulness from day to day and even throughout the course of a single day. Perhaps the most concerning symptom is the severe loss of thinking abilities, which can significantly interfere with their ability to perform daily activities.

The dementia encompasses Parkinson’s disease dementia and dementia with Lewy bodies. The two diseases are differentiated by the order in which symptoms occur. If cognitive symptoms and motor symptoms, such as tremors, are noted at the same time or within one year, the disease is diagnosed as DLB. With Parkinson’s disease, motor symptoms occur much earlier than cognitive symptoms.

The couple began the Morgan Hill-based foundation with the goal of spreading awareness. During the years they have expanded their reach as far south as San Diego and as far north as Sacramento. They offer training to upcoming doctors and nurses on the disease, and they also raise money to fund postdoc students who are dedicated to studying it. With filmmaker Robin Shepherd, they produced a documentary in 2018, titled “Sue’s Story: a Journey with Lewy Body Dementia,” in partnership with the Poppy Jasper International Film Festival.

“How can you have a disease that is so common that gets no funding?” asked Shephard, who co-founded the foundation with Sue and Chuck. “Doctors aren’t trained, they don’t recognize the symptoms, and people suffer unnecessarily and that is just unacceptable. So, I joined them in 2017. We made the film, and we just started going out and talking to health systems to train doctors and nurses.”

Funding research into the disease is critical, Shepherd said. It helps scientists study how to identify biomarkers that can be used to diagnose the disease sooner.

“Until we have biomarkers, we can’t even do diagnostic tests, we can’t identify it with accuracy, and people don’t get the help they need,” she said. “So we connected with Stanford to support research there. We have currently supported two postdoc scholars who have focused on Lewy body dementia research.”

In addition to spreading awareness and funding research, the foundation also offers support to families of patients. Morgan Hill resident Laurie Foster, a new board member, explained the pain and stress the families of patients often face.

“Just a few months ago I was invited by Chuck and Robin to be an administrator for their new caregiver support group,” she said. “My inspiration was my mom, who lost her battle with Lewy body dementia in October. I’m here to give back to the foundation, help them along their journey, and give back and be a resource.”

Calvin Nuttall is a Morgan Hill-based freelance reporter and columnist.