‘Sue’s Story’ begins long journey to dementia cure

Documentary centers on MH resident’s struggle, mission

From left, Nils Myers, L. Mattock Scariot, Sue Berghoff, Robin Shepherd and Chuck Berghoff take the stage at the Morgan Hill Community Playhouse April 6, for a Q&A panel following an exclusive screening of their documentary “Sue’s Story.” The film was one of dozens that screened during the four-day Poppy Jasper International Film Festival.

The Poppy Jasper International Film Festival, which ended Sunday night in Morgan Hill, featured a wide variety of exclusive screenings of original films created by artists from all over the world. But it was a South County-produced documentary about a Morgan Hill woman determined to raise awareness of a common, yet little-known form of dementia that tugged at the heartstrings of local spectators.

“Sue’s Story” is a 38-minute documentary about Sue Berghoff and her family, and how they reacted to her diagnosis in early 2017 of Lewy Body Dementia. The documentary—which debuted to the public for PJIFF April 6 at the Morgan Hill Community Playhouse—chronicles Berghoff’s initial frustration with her mysterious symptoms, to disbelief at her diagnosis, to her steadfast determination to push for more awareness of LBD.

Sue and husband Chuck Berghoff’s ultimate goal—shared by prominent members of the Bay Area medical community interviewed in the documentary—is to generate funding for research that might lead to a cure.

Chuck Berghoff, who travels to San Mateo once a month for an LBD support group, said they’re hoping to expand resources to South County—in particular, Saint Louise Regional Hospital in Gilroy.

“We’ve struck a nerve in that we’re working on broadening awareness of a disease we had never heard of 14 months ago,” said Chuck Berghoff, who has been a Rotary Club of Morgan Hill member since shortly after the couple moved here six years ago. “The way you cure a disease like this is you start with awareness, and that drives funding support, ultimately (leading) to a pharmaceutical company developing a cure.”

“Sue’s Story” features interviews with the Berghoffs, as well as their children, friends and the Bay Area doctors who are leading the research and support efforts for LBD patients and their families. Footage includes clips of a “Pizza In Paradise” fundraiser that the Berghoffs held at their west Morgan Hill home in September 2017, which more than 100 people attended and raised more than $40,000 for LBD research and support efforts.

“Sue’s Story” was produced, written, shot and edited by South County media veterans Robin Shepherd, L. Mattock Scariot and Nils Myers. Scariot and Myers are the owners of 152 West Productions, and have long been involved in the PJIFF. Scariot was director of the 2018 festival, which started April 5 and wrapped up Sunday at the Granada Theater in downtown Morgan Hill. For the first time in its 14-year history, the growing festival spanned multiple venues in Morgan Hill and Gilroy.

“Sue’s Story” was invited to the PJIFF by the festival organizers, and thus it was not eligible for judges’ awards. However, PJIFF audience members voted it the festival’s “Best Documentary,” Scariot said.

LBD is a neurodegenerative brain disease, and the second-most prevalent form of dementia (Alzheimer’s being the most common). There is no cure or effective treatment to halt or slow the progressive disease, which can become debilitating. An autopsy of famous actor Robin Williams’ brain revealed he suffered from LBD.

In “Sue’s Story,” Sue Berghoff’s children and longtime friend Mary Sue Garcia commented on the tragedy of a highly educated, intelligent, driven woman like Berghoff—a Bay Area high-tech professional for more than 30 years—being afflicted with a disease that impacts cognitive functions. But they also commented that they weren’t surprised how she responded with a determination to make a difference so that future LBD patients might not have to suffer as those before her have.

“This is the most important thing I feel like I’ve done in my life,” Sue Berghoff, also an active member of the Morgan Hill chapter of the American Association of University Women, said in “Sue’s Story.”

After “Sue’s Story” screened April 6, the film’s creators and interviewees sat for a Q&A panel with the audience. Included on the panel were the Berghoffs, Garcia, Dr. Kathleen Poston of the Stanford Neurology and Neuroscience Center and Robin Riddle of the Brain Support Network. Shepherd and Scariot were also on stage to answer questions.

Chuck Berghoff said on-stage during the Q&A, “This film is just the beginning of our journey (to) grow and pursue research funding.”

Shepherd said Tuesday that while “Sue’s Story” was in production, the Friends of the Morgan Hill Senior Center donated $10,000 to the Lewy Body Dementia Awareness & Research Fund, which was recently established under the Morgan Hill Community Foundation. “That was a huge help in getting us started,” Shepherd said.

The research fund continues to accept donations, which can be made at the MHCF website at morganhillcf.org.

The producers’ next step is to distribute the film to universities, hospitals, senior centers, nonprofit organizations and more film festivals, Shepherd said. 

HOW TO HELP

To make a donation to the Lewy Body Dementia Awareness & Research Fund, visit the Morgan Hill Community Foundation’s website at morganhillcf.org.

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