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The Sue’s Story Project Progress is Sweet “Every day is a new day. If there’s anything I can do, positive things to make things better for someone else who has this disease, what could be better than that?” Sue Berghoff Article and Photo Submitted By The Sue's Story Project Team E ver since The Sue’s Story Proj- ect got its start three years ago, co-founders Sue and Chuck Berghoff and Robin Shepherd have been advocating for increased de- mentia awareness, research, and caregiv- ing resources. South County is showing support for this grass roots effort, and progress is sweet. According to Chuck, “When my wife Sue was diagnosed with Lewy Body Dementia, she decided to make some- thing positive from her diagnosis, and her decision has been opening doors ever since.” Sue, Chuck and Robin formed The Sue’s Story Project to advocate for improved quality of life for families liv- ing with Lewy Body Dementia (LBD). Step One: learn as much as pos- sible about the disease. They soon real- ized that LBD needed more attention if things were ever going to improve. LBD is not well-known or under- stood despite the fact that it’s the third most prevalent form of progressive dementia worldwide. Similarities and differences between LBD symptoms and those of Alzheimer’s and Parkinson’s dis- eases make it difficult to diagnose. This inhibits efforts to establish clinical trials for targeted drug therapies. 14 “It’s extremely frustrating for many families,” Chuck said. “Currently there is no treatment to prevent, slow or cure LBD. The average life expectancy from time of diagnosis—and that’s a gray area—is six to nine years." Step Two: partner with organi- zations in dementia research and dementia care. They include Stanford Medicine, Kaiser Permanente, the Brain Support Network, the National Caregiver’s Alliance, Dementia Friends, university nursing schools, and county as well as city government agencies focused on healthy aging and senior services. Step Three: host informational events featuring a screening of “Sue’s Story,” their documentary about Sue’s journey with dementia, followed by Q&A with a panel of healthcare, research and social services experts. Last year they toured seven cities, reaching people countywide. Step Four: form an Advisory Group, connecting with like-minded people who can help with the Project mission. Advisor Nick Gaich is a healthcare consultant and Board President of Morgan Hill Community Foundation. “I’ve seen the benefits of continuing education for physicians and nurses. GILROY • MORGAN HILL • SAN MARTIN SPRING 2020 We need to develop curriculum around LBD. This Project not only supports Continuing Medical Education for phy- sicians, but also Nursing School train- ing for university students,” Nick said. Comedian Robin Williams battled what he thought was Parkinson’s until a post-mortem brain autopsy revealed he had LBD. His wife Susan Schneider Williams referred to his disease as “the terrorist inside my husband’s brain” and called on medical researchers to make LBD a priority. The Sue’s Story Project team met Dr. Kathleen Poston at Stanford and learned that medical research centers, founda- tions, and government agencies such as the National Institute of Health are col- laborating more to better understand, diagnose and treat neurodegenerative diseases. “Dr. Poston’s work inspired us to create a fund at Stanford to support post-doctoral research focused on LBD,” Chuck said. “Last year we raised $200,000 for this objective. Stanford now has research underway to identify biomarkers for LBD that could make diagnosis as simple as taking a blood test.” Poston is now an Advisory Group member. Sue and Chuck are experiencing