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DIRECTOR’S MESSAGE Since opening in 2009, Cleveland Clinic (see page 11). Our aim is to understand our Lou Ruvo Center for Brain Health has patients and the sources of their suffering, and facilitated more than 246,000 patient to integrate compassionate transdisciplinary appointments with our providers. More treatment and research to improve the lives of than 5,565 lives are currently in our care, today’s patients while we prepare trainees to representing a total of more than 26,000 visits care for tomorrow’s patients, and drive research in 2021 as we await the final tally for 2022. to hasten the day when there are no more patients (see page 21). The number of families we've served is impressive, but their importance lies not in that In 2023, we celebrate our 26th annual number; rather, it is in the extraordinarily deep Power of Love® gala. This year will be different knowledge we have been able to gain about without our original caregiver, Angie Ruvo, who what brain degeneration means. spurred her son Larry to turn pain into purpose, raising millions to relieve the suffering of other Yes, we have gained insight into proteins, families. On February 18, the anniversary inflammation and neuroimaging (see page 9). of the death of her husband, Lou — the Dylan Wint, MD More fundamentally, we are developing a better eponymous inspiration for a “one-stop shop” Center Director understanding of how the biology of disease to reduce the burden on other families — we and its related symptoms impact interpersonal kick off the next quarter-century of fundraising. Camille and Larry Ruvo Chair for Brain Health relationships, particularly family dynamics We will present our Community Leadership (see page 25). For example we have assembled Award to John Paul DeJoria, the man who Director, Education a team of experts to help families consider serendipitously handed the very first check Las Vegas Legacy the benefits and burdens of testing for the to Larry to “do something about Alzheimer’s Chair for Neuroscience Education hereditary condition Huntington’s disease disease in Lou’s honor" (see page 3). (see page 15). Cleveland Clinic Lou Ruvo Center for Please join me and 25 years of supporters Brain Health Our team continues to stretch their own at our Power of Love gala and build upon brains in pursuit of advanced specialization the legacy of Angie and Lou Ruvo, sustaining (see page 13). We are actively pursuing deeper the family’s dream of a future without understanding of how social determinants in brain degeneration. communities outside Nevada’s urban cores affect the prevalence and impact of dementia See you on Saturday, February 18. 1 New Thinking About Thinking Spring 2023
NewThinking SPRING 2023 Cleveland Clinic Nevada 702.483.6000 | clevelandclinic.org/Nevada Research, treatment and education for patients and families living with brain disorders A BOU T T HINK ING ALZHEIMER’S DISEASE PARKINSON’S DISEASE FRONTOTEMPORAL DEMENTIA MULTIPLE SYSTEM ATROPHY LEWY BODY DEMENTIA MULTIPLE SCLEROSIS HUNTINGTON’S DISEASE CONTENTS FE AT URE S 3 Serving Up a Recipe for Better Neurological Care 5 25 Years of Impactful Giving: Celebrating the Power of Love® 7 Remembering David Humm, the Original Las Vegas Raider C L INI C A L RE SE A R C H UPDAT E 9 Research Studies Drive Advances in Quest to Unlock the Mystery of AD 11 In Rural Nevada, an Urgent Need to Reduce Dementia Disparities 12 Retired Fighters Gain Improvement in Cognitive Function, Study Shows 13 Specialty Certifications Affirm Center’s Exceptionalism 5 WO RL D C L A S S C L INI C A L C A RE 15 In Families With Huntington’s Disease, an Agonizing Decision for Every Member 16 Wondering About Wandering? 17 Can You “Dual Task”? Physical and Cognitive Tasks Work Body and Brain 18 “Microhabits” Yield Macro Results in Personal Health 19 Dementia: It’s Time to Talk PHIL A N T HRO P Y AT WO RK 20 New Research Highlights Women’s Cognitive Health Risks 21 An Approach That Serves Patients and Providers Well 11 22 2.0: Volunteer Program Gets a Reboot 23 Public-Private Funding Changes Nevada’s Neuroscience Landscape C A RIN G FO R C A RE PA R T NE RS 22 25 Guilt: A Constant Companion in Care Relationships O N T HE S C E NE 30 All In for Brain Health 31 Visitor Photo Gallery 32 Month of Memories Be a lobby 7 volunteer! 33 Creative Collaborators Host Events to Support Brain Health 34 Recognized for Excellence clevelandclinic.org/Nevada 2
FE ATURES The Ruvo family arrives in Las Vegas Serving Up a Recipe for Better Neurological Care So an energetic maître d’ and a chef walk Alzheimer’s: An Uninvited Guest into a neurology desert… But make no Fast forward to 1991 and changes in mistake: This isn’t the beginning of one Lou’s memory had become undeniable. of “those” jokes. Rather, it was the The desert town that had been a great beginning of one family’s legacy that has venue for growing a business and raising impacted a city of more than 2 million. a son didn’t have the healthcare And we’re deadly serious. resources the Ruvo family needed. When Angie and Lou Ruvo relocated After visiting numerous doctors in search from Buffalo, New York, to Las Vegas of an explanation for the changes friends in 1955 with their son, Larry, age 9, and family had noticed in Lou, Angie Ruvo they opened the Venetian Ristorante. met Leon Thal, MD, in San Diego. The It was the “see and be seen” dining renowned researcher put his hand on experience in town, attracting celebrities her shoulder and said, “Mrs. Ruvo, you and locals alike. Angie was widely have a 24-hour-a-day job here. Lou regarded as Las Vegas’ first celebrity has Alzheimer’s.” chef. Lou never forgot a face, and would greet guests with a question about a Less than three years later, on February mutual friend or the continuation of 18, 1994, Angie found Lou dead on their a previous conversation. bedroom floor from a heart attack. THE MOST WELCOME OF GUESTS: Enter John Paul DeJoria “It was February 1995 and I was hosting given a check, others began opening their a dinner at Spago for my company during a wallets; $35,000 had been raised by hair convention,” John Paul DeJoria recalls. evening’s end. Camille and Larry Ruvo went “When I arrived, the maître d’ said, ‘JP, did home that night with a new family mission: you know your friend Larry Ruvo is here They would continue to keep Lou Ruvo’s holding a dinner in memory of his dad?’” memory alive by doing something to change the trajectory of Alzheimer’s disease. About 35 people had gathered at Chef Wolfgang Puck’s flagship Las Vegas A self-made man who emerged from restaurant, Spago, on what is now an homelessness to co-found John Paul historic night to pay tribute to Lou. Mitchell Systems and Patron Tequila, John Paul lives by the motto “Success “In appreciation of our friendship, I wrote unshared is failure.” If he hadn’t shared his Larry a check for $5,000 and said, ‘Put this success with us, the Lou Ruvo Center for toward something to change Alzheimer’s.’” Brain Health wouldn’t exist. And so, we’re Larry never envisioned the memorial dinner presenting John Paul with the Community would become a fundraising event but, when Leadership Award at the 26th annual he announced to guests that John Paul had Power of Love® gala (see page 5). John Paul DeJoria takes the microphone at the gala in 2012 3 New Thinking About Thinking Spring 2023
FE ATURES The Rise of Ruvo: World-Class Neurology Care Emerges from the Desert Dust Camille and Larry Ruvo set about to deliver to Nevada families living with Alzheimer’s disease the reassurance that a firm diagnosis and ongoing education and Larry Ruvo, with his mother, support can offer. In 2007 they broke Angie, at the 2019 gala ground on a Frank Gehry-designed structure in downtown Las Vegas. On July 13, 2009, Cleveland Clinic Lou Ruvo Center for Brain multiple sclerosis, and it is clear Nevada is for the Lou Ruvo Center for Brain Health Health welcomed its first patient. facing an unprecedented need. and our commitment to caregivers through no-cost educational, therapeutic and support Since that time, the center has hosted more Turning Pain into Purpose: services (clevelandclinic.org/NevadaEvents). than 246,000 patient visits, and expanded to Our first Power of Love without Angie treat and research additional neurodegenera- On May 12, 2022, Angie Ruvo died These programs are part of Angie’s tive diseases. In the process, it has become peacefully in her sleep at age 98. The remarkable legacy, as is our Angie Ruvo the Nevada’s first and only to earn these wife of Lou Ruvo, namesake of our center, Endowed Caregiving Chair, funded by Larry designations for its research and care: and mother of Larry Ruvo, Angie was the and Camille. A caregiver in every sense of matriarch of our Cleveland Clinic Lou Ruvo the word — wife, mother, grandmother and • CurePSP Centers of Care Center for Brain Health family, and looked great-grandmother — Angie undeniably • Parkinson’s Foundation Center forward each year to attending the Power impacted our center and our community. of Excellence of Love. • Exploratory Alzheimer’s Disease We will Keep her Memory Alive forever. Research Center from the NIH The burden of Angie's caregiving journey We hope you can celebrate her legacy with — one that more than 11 million Americans • “Partners in Care” from the us at this year’s Power of Love. experience today — served as the catalyst National Multiple Sclerosis Society (only program in Southern Nevada) A NEUROLOGY DESERT JOIN US TO KICK OFF THE NEXT 25 YEARS OF FUNDRAISING Not just Alzheimer’s: Cleveland Clinic is committed to growing Nevada's neuroscience The need is far-reaching landscape, and you can help. Yet, despite these accomplishments, there’s Displaying a spirit of warmth and giving, Angie never said no to a charity and still not enough access to accommodate the as Co-Owner of the Venetian, routinely donated dinners at the restaurant for fundraising events. oncoming neurological tsunami. Declaring Nevada a “neurology desert,” the It’s this spirit of philanthropy and hospitality that she instilled in her son. Larry and his Alzheimer’s Association’s 2022 Alzheimer’s wife, Camille, serve as Co-Founders and Vice Chairs of Keep Memory Alive, and have Disease Facts & Figures report projects raised millions for healthcare in Nevada. that by 2025, the state will have fewer Fittingly, on February 18, 2023, the anniversary than 10 neurologists per 10,000 residents of the very day Lou Ruvo died, we’re celebrating with dementia — despite ranking third our 26th annual Power of Love® gala (see page 5). nationwide for anticipated growth of Join us to celebrate the impact of the entire Ruvo Alzheimer’s disease. family on their adopted hometown, Las Vegas. Factor in the impact of Huntington’s, Tickets at keepmemoryalive.org/POLnt Parkinson’s and the other movement or 702.263.9797. disorders we treat, as well as that of clevelandclinic.org/Nevada 4
25 YEARS OF IMPACTFUL GIVING: Celebrating the Power of Love® On Saturday, February 18, 2023, the anniversary of the very day Ask Larry Ruvo for a memorable moment from our namesake, Lou Ruvo, died, the first 25 years of the Power of Love and he’ll cite the 1996 gala when he ran out of auction we’ll kick off the next 25 years items, and John Paul grabbed the mic to say, “I of fundraising to benefit have an additional auction item. It’s from your Cleveland Clinic Lou Ruvo heart. I want to auction off absolutely nothing.” Center for Brain Health. After an enthusiastic bidder snatched up “nothing” for $25,000, the duo — encouraged The highly anticipated evening of by the audience — repeated the feat twice friendship and philanthropy will more, and the concept of giving from the heart showcase performances from a list became forever synonymous with the Power of notable artists, as well as live of Love. and silent auctions featuring an And so, Keep Memory Alive will present its array of truly priceless products and 2023 Community Leadership Award to John Paul DeJoria, Co-Founder of John Paul Mitchell experiences that you've come to Systems and Patron Tequila. See page 3 for expect at the Power of Love gala. more about our friend, John Paul, who wrote Celebrity Chefs Wolfgang Puck the first check to keep Lou Ruvo’s memory alive. and Tal Ronnen will take your palate on a culinary journey with distinctive dishes made especially for the Power of Love gala. Community Leadership Award Recipient John Paul DeJoria And you could be there. 5 New Thinking About Thinking Spring 2023
Remembering David Humm You are the power behind our promise to families Pay tribute to a Las Vegas and to our community. native and the original Las Vegas Raider, the late David Humm, JOIN US ON to shine a light on multiple SATURDAY, sclerosis and the innovative FEBRUARY 18, 2023 clinical care and research at the MGM Grand in Las Vegas being done at Cleveland Clinic Lou Ruvo Center for TO SUPPORT Brain Health. (See page 7.) Chef Wolfgang Puck We encourage you to buy a seat, table or ad. Bid on auction items. Every Combining classic French investment makes a big impact on our techniques with California and Asian ability to sustain the Lou Ruvo Center influences, Wolfgang Puck has for Brain Health’s important work. changed the face of dining in cities throughout the nation and across This not-to-be-missed event will the world. Starting in Los Angeles, sell out. Get your tickets today: then in Las Vegas, where he was keepmemoryalive.org/POLnt or the first celebrity chef to create a 702.263.9797 contemporary fine dining restaurant, he paved the way for the city’s If you’re not receiving our event metamorphosis into an acclaimed updates in your inbox, go to dining destination. clevelandclinic.org/NVnews to get on the list. Chef Tal Ronnen SPONSORED BY: The founder and chef of Crossroads Kitchen in Los Angeles’ West Hollywood neighborhood, with recent openings in Calabasas + Resorts World in Las Vegas, Tal Ronnen first became known nationwide as the chef who prepared the meals for Oprah Winfrey’s 21-day vegan cleanse. He's a New York Times best-selling cookbook author and conducts master vegetarian workshops for students and staff at Le Cordon Bleu College. clevelandclinic.org/Nevada 6
FE ATURES Remembering David Humm, the Original Las Vegas Raider At the peak of his professional football career, with a physique likened to Adonis, David DAVID HUMM Humm was a product of six to seven hours An All-American quarterback at Bishop Gorman High School, David Humm was of daily workouts and nutritious eating, among the most heavily recruited prospects to ever come out of Nevada. He won two Super Bowl rings with the Raiders, and was so beloved by former owner Al Davis punctuated by the beer and fellowship he that he remained on the team’s payroll — appearing on Raider radio broadcasts and enjoyed with friends, family and teammates. helping sell suites — decades after his playing career ended. Retired Dallas Cowboy and fellow Nevada The Las Vegas native and lifelong Southern Nevada resident is recognized as "The native Glenn Carano recalls speaking on Original Las Vegas Raider," even though the team was not based in Las Vegas during his the phone from Reno with his friend after playing days. In 2022, the David Humm Broadcast Booth was unveiled at Allegiant David's retirement. When David "didn’t sound Stadium, the team’s new home in Las Vegas. like himself," Glenn knew just what to do: “I Humm was the first inductee into the Southern Nevada Sports Hall of Fame in 1997. rallied our friends Conrad Dobler of the Buffalo He was inducted into the Nebraska Sports Hall of Fame in 1985 and, in 1999, the Las Bills and Phil Villapiano of the Raiders and Vegas Review-Journal sports staff voted him the No. 9 local athlete of the 20th century. we flew to David’s home with pizza and beer. We hung out and reminisced, because that’s Tom once asked Raiders owner Al Davis Even from his wheelchair, David would say, the kind of thing we’d do for each other.” why their family loved David so much. The “MS is not going to beat me.” reply? David's relentless commitment to Respected for his successes on the field excellence and his pride and poise on the Yet, he opted never to have treatments for his and for his vivacious spirit that inspired field, in the broadcast booth and in life. MS. Ultimately, David realized you can’t eat those around him, David was fun and family or exercise your way out of this disease, says focused, remembers his brother, Tom Humm, The Raiders’ support — and David’s Tom: “That was a big departure because in one year his junior: “David never took his fame tenacity — lasted to the end. When David high school football in our era, you didn’t get seriously. He just wanted to play golf with me was very ill, Al’s son and Raiders owner hurt. You played through.” and looked forward to our family Thanksgiving today, Mark Davis, spent time in David’s celebrations. I wear David’s Super Bowl ring hospital room. The pair had great respect It was his sister, Lori's, MS diagnosis in 2005 that he gave me on our dad’s birthday. for each other, says Lori. that opened David’s eyes to the benefits of disease-modifying therapies (DMTs). “Growing up, for David and me, everything A family affair revolved around the sports he and I played “He saw me doing so well and couldn’t deny Courtney, the primary caregiver for her together,” says Tom. “Our sisters, Cathy and the difference,” says Lori, who walks without father, says he almost died when she Lori, were in the background. Yet, they have assistance and frequently hears, “What? was 12 and again when she was 21: been the guiding light, the stability, the You have MS? But you look so good!” “He was crazy tough. Mentally, he never kindness that Mom and Dad loved about faltered. Physically, he was really good David died in 2018 at age 65; Courtney our family. People stand in galas and talk until he just wasn’t.” was 28. about David, but his essence came from our parents and our sisters.” Raider for life “Our father, Clair, always said the only thing you’re born and In 1986, after retiring from the NFL, David die with is your name. The received a diagnosis of multiple sclerosis 2023 Power of Love® gala is (MS). He was in a wheelchair by the time honoring David’s name. Even his daughter, Courtney, was 8. Yet, she says, though he was exceedingly her father was a willing accomplice in her humble and deflected attention, school show and tells, sharing football stories David would be proud to and memorabilia, and giving her classmates know he’s lending his name to rides in his wheelchair. help shine a light on multiple sclerosis in collaboration with “I played every sport and by my graduation, Cleveland Clinic, a world- renowned treatment and he had only missed two of my games, research center right here and we all gave him good-natured crap for in his beloved Las Vegas.” those two,” recalls Courtney. David playing college ball for David Humm with daughter, — Tom Humm the Nebraska Cornhuskers Courtney, circa 2002 7 New Thinking About Thinking Spring 2023
FE ATURES L-R: Tom, Cathy, Lori and David Humm Dr. Hua. “DMTs reduce the frequency and MOST FREQUENT SYMPTOMS severity of MS attacks. All current research 35% indicates that individuals will be less 49% VISION disabled if on a treatment. Even a five-year COGNITIVE PROBLEMS SYMPTOMS delay from diagnosis to treatment has a 43% DEPRESSION significant negative impact in wellbeing.” 32% VERTIGO 84% Team MS FATIGUE In addition to DMTs, today’s standard of 23% BOWEL 51% MS care dictates a multidisciplinary team DYSFUNCTION PAIN approach to address symptom and lifestyle 42% management, including a specialized MS BLADDER neurology provider and experts in neuroreha- 70% DYSFUNCTION bilitation, behavioral health and more, with NUMBNESS 71% a shared goal to improve quality of life. WALKING A disease that doesn’t kill, 51% PROBLEMS but shortens lifespan What’s next in MS? Dr. Hua predicts: SPASMS 6% Affecting nearly 1 million Americans, • Improved biomarkers – treatment OTHER MS is one of the leading causes of response, early predictors of progression non-traumatic disability in young adults. “As a neurologist, I’d like to increase • Better interventions for disabling, invisible symptoms, such as numbness and eyesight general awareness of the varied “MS is an autoimmune demyelinating symptoms of MS, in disease of the central nervous system, • Evidence to guide treatment approaches hopes the public will meaning immune cells target your own body, • New treatment targets (reparative/ destroying the myelin, a protective cover on seek medical care restorative; neuroprotective) so an early diagnosis the nerves,” explains Le Hua, MD, Director, Neuroimmunology and Multiple Sclerosis can be made and To make an appointment at Southern Program at Cleveland Clinic Lou Ruvo treatment started Nevada’s only National Multiple Sclerosis Center for Brain Health. as soon as possible, Society Partner in Care, please call which presents The first therapy for MS was approved in 702.483.6000 or learn more at the opportunity to 1993, and there has been an explosion of clevelandclinic.org/NevadaMS. reduce disability and therapies in the last 10 years. disease progression,” To support our MS program, says Dr. Le Hua. “Even today, a lot of people still aren’t contact us at DonateNevada@ccf.org getting the treatment they need,” says or 702.263.9797. MS DISEASE MODIFYING THERAPY APPROVAL TIMELINE 2014 Pegylated IFNβ-1a Alemtuzumab 1993 2017 IFNβ-1b (Betaseron®) 2009 Ocrelizumab IFNβ-1b (Extavia®) 2019 1996 Siponimod 2010 IFNβ-1a (Avonex®) Cladribine Fingolimod Glatiramer Acetate 2002 2005 Diroximel Fumarate IIFNβ-1b (Rebif®) Lori Humm 2012 2021 1986 diagnosed with MS Teriflunomide 2020 Ozanimod Ponesimod David Humm diagnosed with MS 2000 2006a 2013 Ofatumumab Mitoxantrone Natalizumab Dimethyl Fumarate Monomethyl Fumarate 1995 2000 2005 2010 2015 2020 Ù Studies conducted at Cleveland Clinic Lou Ruvo Center for Brain Health Infusions Oral Injections a Re-approved under Risk Evaluation and Mitigation Strategies program clevelandclinic.org/Nevada 8
CLINICAL RESE ARCH UPDATE Research Studies Drive Advances in Quest to Unlock the Mystery of AD It’s been more than 100 years since Alois Health has contributed to numerous research proteins in the brain associated with Alzheimer identified “an unusual disease studies in Alzheimer’s disease (AD), driving Alzheimer’s disease (tau and amyloid) of the cerebral cortex” that now bears his significant progress in clinician-scientists’ • Gaining understanding of how biological name. We now know that this “unusual” understanding of the disease. markers such as inflammation and brain disease is in the brains of more than shrinkage contribute to cognitive decline 6 million Americans, and it is a condition Highlights include: • Studying the potential for whose effects extend far beyond an • Conducting trials of the first FDA-approved monoclonal antibodies to delay or individual’s cortex. Yet there is still no medication in the past 20 years prevent cognitive decline cure for this devastating malady. (aducanumab), along with other promising treatments (e.g., lecanemab) Here’s a small portion of the research However, since opening our doors in 2009, • Imaging and laboratory tests for major we’ve conducted that makes it all possible. Cleveland Clinic Lou Ruvo Center for Brain The Painstaking Path to Understanding Alzheimer’s Disease CATEGORY OF STUDY THE STUDIES WHAT WE LEARNED WHY IT MATTERS Biomarker Studies ADNI Biological changes in AD occur Understanding the biological ADRC decades before symptoms changes is invaluable. What can we learn about the emerge. We can identify these Biomarker studies have led to natural course and biological changes in the brain. more sophisticated drug trials changes that occur in AD? that take our understanding of AD to the next level. Repurposed Agents BEAT AD (bexarotene) Although some of these studies Repurposing agents is faster TOMMOROW (pioglitazone) showed benefits, none of these because these medications Can medications currently medications seemed powerful are already available. The future used for some other RASAGILINE RESCUE enough to have a meaningful of AD therapies will likely condition be helpful in AD? (rasagiline) effect on AD. combine treatments of various MCLENA (lenalidomide) medications, including repurposed agents. Monoclonal Antibodies EMBARK, EMERGE Although these monoclonal Amyloid is a major contributor (aducanumab) antibodies all target amyloid, to the risk for cognitive decline, Can designer antibodies AHEAD they operate at different steps especially from Alzheimer's activate the body’s immune in plaque formation. disease. They clearly are system to remove toxic CLARITY (lecanemab) effective at removing amyloid molecules from the brain? A4 EXPEDITION (solanuzemab) but their clinical benefit is These antibodies are GRADUATE (gantenerumab) still uncertain. designed to “flag” amyloid for removal. CREAD (Crenezumab) TANGO (Gosuranemab) Small molecule studies GENERATION (umibecestat) So far, small molecules have The biochemical reactions MISSION AD (elenbecestat) not stopped the progression that lead to AD are numerous Can new medications of disease. In some instances and probably not the same targeting biological NOBLE (edonerpic) studies were stopped before in everyone. Molecules that processes other than completion. Nevertheless, worked in animal studies did plaque formation disrupt even a “failed” study teaches not succeed in people. But, like the biology of AD? us about targets that are not other drugs, small molecules worth further investigation. may turn out to be important in combination therapies. 9 New Thinking About Thinking Spring 2023
CLINICAL RESE ARCH UPDATE What’s on the horizon? Locally, our research represents and supports the rich diversity of our Nevada communities. Our research follows strict scientific standards that protect patients and produce reliable, repeatable results. Each and every study visit is a chance for us to learn, then apply that new knowledge. Each participant’s role in our research is a gift to future generations. “We’ve established a critical mass of outstanding investigators in Las Vegas to pursue funding and conduct the research,” says Dylan Wint, MD, Director, the Lou Ruvo Center for Brain Health. “We can’t operate research without funding, and we can’t make new discoveries without study participants.” (See page 23.) Our goal? We will help to discover more effective and accessible treatments, diagnostic methods, and processes that can be developed and moved to the market quickly. We’re striving to: • Better understand and treat Alzheimer’s disease and related dementias • Develop therapies and combinations that target specific disease processes • Include individuals across socioeconomic, geographic, racial and ethnic backgrounds to capture all aspects of disease and individualize interventions YOU A ND YOUR BR AIN C A N HELP Together as collaborators, we can advance scientific knowledge, investigate new treatments and potential cures, and discover new ways to maximize brain health to prevent disease right here in our community. Learn more at clevelandclinic.org/NevadaResearchNT or contact us at healthybrains@ccf.org or 702.701.7944. clevelandclinic.org/Nevada 10
CLINICAL RESE ARCH UPDATE In Rural Nevada, an Urgent Need to Reduce Dementia Disparities Health disparities in Alzheimer’s disease (AD) and related dementias are particularly The Nevada Numbers: • By 2025, Nevada will have striking in rural communities, where • 10% of Nevada’s population is fewer than 10 neurologists per residents often go undiagnosed or are Alzheimer’s spread across roughly 90% of 10,000 people with dementia (the bottom 40% nationwide) misdiagnosed due to lack of access to dementia specialists. More specifically: Disease in its land mass, making access to healthcare geographically • In 2022, the Alzheimer’s • The relative risk for dementia is 80% The Silver challenging Association labeled Nevada higher for those living in rural State • 49,000 Nevadans are currently living with Alzheimer’s disease a ‘neurology desert’ The impact in Nevada: communities • Survival following diagnosis is often • Age is the greatest risk factor • 48,000 family caregivers shorter compared with those in urban for Alzheimer’s disease bear the burden communities • Nevada is ranked 3rd nationwide • 79 million hours of unpaid for growth of Alzheimer’s and care by families Ten percent of Nevada’s population is spread related dementias (© 2022 Cleveland Clinic) across roughly 90% of its land mass, making access to healthcare challenging for This gap in care and lack of reliable data Lower education, access to quality health individuals living outside the urban cores of for rural patients is the driving motivator for care, and social connectedness can also Reno and Las Vegas. An unfavorably low the NVeADRC, awarded to Cleveland Clinic influence the risk of developing Alzheimer’s ratio of providers to population throughout Nevada in 2020 and supported by $3.3 and other dementias and have also been the state further compounds access issues. million in funding from the National Institute found to differ between urban and rural on Aging at the National Institutes of Health communities. Collectively, these and other Enlisting patients to fill research gaps (see page 24). social determinants of health account for What’s more, those living and aging in rural upwards of 40% of health outcomes, and communities are severely underrepresented The NVeADRC is developing novel addressing them is a key step toward in research. methodologies and technology to establish eliminating health disparities. a cohort of rural-dwelling older adults and “The literature on people with dementia in collect high-quality data to share with the Out and about: a mission for the mind rural areas is scarce and usually includes only broader scientific community. The goal is To date, the NVeADRC has enrolled more a small number of non-diverse individuals to better understand aging in rural America, than 70 individuals from the communities of with limited sets of biomedical data, largely including geographic disparities and the Mesquite, Pahrump and Laughlin, Nevada derived from retrospective healthcare claims determinants of health that may increase and neighboring communities in northwestern data,” says Justin B. Miller, PhD, Director, risk for developing Alzheimer’s and other Arizona and southwestern Utah. Nevada exploratory Alzheimer’s Disease dementias in our rural communities. Research Center (NVeADRC). The goal is to identify individual risk factors for Where you live matters atypical brain aging and to intervene when Rural living presents a complex set of environ- and where possible to maximize everyone’s SOCIAL DETERMINANTS OF HEALTH mental exposures, some of which promote chances for successful, healthy aging. Non-biological factors that influence healthy aging and longevity, such as reduced health outcomes air and noise pollution, stronger sense of We are seeking research volunteers at least 40% from community, greater access to outdoor recre- 55 years old who live elsewhere in Nevada socioeconomic ation and green space, and reduced stress. than Las Vegas or Reno and are interested factors (education, in participating in an observational study. employment, income) On the other hand, neighborhood We need individuals without memory issues 40% disadvantage (ND) — as measured by a as well as people with mild memory 30% from health 17-factor Area Deprivation Index spanning problems. A stipend will be provided as a behaviors population age, income, housing costs, courtesy for participation. Together, we can 30% residents per bedroom and more — is higher learn more about Alzheimer’s disease and 20% from access in most rural communities throughout the how we can improve brain health for you and quality of care United States. However, Dr. Miller notes, and your neighbors. 20% “Most of the literature on ND has focused on 10% from the Learn more at physical environment small pockets of disadvantage within urban 10% communities. These findings may not apply nvadrc.org/NewThinking or contact our (housing, etc.) to rural communities.” recruitment specialist at 702.701.7944. 11 New Thinking About Thinking Spring 2023
CLINICAL RESE ARCH UPDATE Retired Fighters Gain Improvement in Cognitive Function, Study Shows Repetitive hits to the head increase the then went two years without fights while governing bodies are educating individuals risk of long-term neurologic conditions like active fighters continued to fight. Over around the number of rounds they should chronic traumatic encephalopathy (CTE), three years, all fighters had brain scans. fight,” he says. cognitive and behavior problems, and They completed tests of how well their parkinsonism. However, clinician-scientists brains were working at the beginning and Adds Dr. Bernick, “Future research is haven’t known what happens to people the end of the study. needed to determine if there is a time in who have been exposed to head blows a fighter’s career where recovery is less that then stop. Until now. In the areas of verbal memory, motor likely to happen, or to identify factors that speed and processing speed, the retired might indicate greater risk for developing Boxers and mixed martial arts (MMA) fighters saw improvements in their scores a neurodegenerative condition.” fighters may see some recovery in their over time, while the active fighters’ scores thinking and memory skills as well as brain were stable or showed subtle declines. structure after they stop fighting, according PHIL A NTHROPY to a Cleveland Clinic Lou Ruvo Center for For verbal memory, Dr. Ritter and PACK S A PUNCH Brain Health study published online in co-author Charles Bernick, MD, used scores from an FDA-approved thinking and The Professional Athletes Brain Neurology in September. Health study has received funding behavior test, with higher scores indicating from the Department of Defense, “The results of this study suggest a recovery better memory. They found that over time, Lincy Foundation, Ultimate Fighting of cognitive functioning in fighters who are retired fighters on average had an increase Championship Company (UFC), no longer exposed to repetitive hits to the of three points whereas active fighters had Top Rank Promotions, Haymon head,” says Aaron Ritter, MD, who has an average decrease of two points. Boxing and the August Rapone served since 2018 as principal investigator Family Foundation. of the Professional Athletes Brain Health Increasing awareness Study (PABHS). Dr. Ritter notes that since his own youth Interested in funding novel research football days, most play has turned to flag at the Lou Ruvo Center for Brain Encouraging Results football until high school. In mixed martial Health? Contact our philanthropy All fighters had fought professionally within arts, too, “there is broader awareness of how team at 702.263.9797 or a year of the study’s start. Retired fighters much sparring fighters should do, and sports DonateNevada@ccf.org. BERNICK IS BACK ! Charles Bernick, MD, MPH, has been involved in Alzheimer’s disease research and treatment for more than 30 years. He moved to Las Vegas in 1994 to join the University of Nevada School of Medicine and directed the development of a statewide network of Alzheimer’s disease care. Dr. Bernick joined the Lou Ruvo Center for Brain Health upon its opening in 2009 and, in 2011, launched the PABHS. With more than 900 participants, it is the largest longitudinal study of repeated head injury in professional athletes. While relocating his clinical practice to the University of Washington in 2018 to be closer to family, Dr. Bernick remained involved in the PABHS. In October 2022, he returned full time to the Lou Ruvo Center for Brain Health. Although Dr. Ritter's clinical practice has now moved out of state, the pair continue to collaborate in their study of professional athletes at Cleveland Clinic. clevelandclinic.org/Nevada 12
WORLD CLASS CARE Specialty Certifications Affirm Center’s Exceptionalism Patients often say, “I knew something was conferring their designations only on those Neurorehabilitation (physical, changing in my health, but I wasn’t sure who meet the criteria that will produce the occupational and speech therapy) what to do.” Navigating care can be best possible results for patients. As of October 2022, 100% of our challenging. That’s why consumers and Since opening in 2009, Cleveland Clinic physical and occupational therapists referring providers — such as internists, Lou Ruvo Center for Brain Health has had become PWR!Moves® certified geriatricians and general neurologists — received an array of such designations. therapists. The Parkinson Wellness look to centers of excellence and other Recovery program addresses specific designations for consistent, evidence-based INDIVIDUAL PROVIDER CERTIFICATIONS exercise types to trigger brain health and specialty care. Our care teams have achieved additional, repair mechanisms in individuals with The most informative designations are optional specialty certifications unique to Parkinson’s disease (pwr4life.org/moves). conferred by third parties, such as disease their respective professions. The American Physical Therapy associations or the National Institutes of “We believe this targeted training positively Association (APTA) offers optional Health — entities that understand nuanced impacts patients and their families through opportunities for therapists to prove health conditions, have established more nuanced diagnoses and treatment knowledge in focused areas of practice. standards for research and treatment, and plans,” says Dylan Wint, MD, Director, Our PTs have earned the Board-Certified have surveyed the national landscape, Lou Ruvo Center for Brain Health. “This is Clinical Specialist designation in reinforced each time a family tells me how Neurologic Physical Therapy and a member of our care team was able to Geriatric Physical Therapy and the ‘get through to their loved one when no Certificate in Vestibular Rehabilitation. Only top-10 neurology one else could’ or a patient thanks us for To find specialized PT near your home, program in the ‘reassurance of a firm diagnosis after visit apta.org. Nevada a long quest for an explanation.’” CERTIFICATIONS ACROSS DISCIPLINES Neurology Multiple sclerosis Exploratory Not to be confused with trainees (see Alzheimer’s Disease sidebar on fellowships), “Fellow” status The Consortium of Multiple Sclerosis Research Center Centers supports a voluntary certification with the American Academy of Neurology from the NIH process, the Multiple Sclerosis Certified (Nevada’s first (AAN) recognizes exemplary work and and only) achievements in the neurosciences and Specialist (MSCS) examination, which the clinical practice of neurology. In formally recognizes a specialized body of Parkinson’s addition to meeting the requisite criteria, knowledge believed necessary to provide Foundation applicants must be endorsed by more optimal care to individuals and families Center of Excellence living with MS. At the Lou Ruvo Center seasoned neurologists. Three of our (Nevada’s first for Brain Health, a team of PTs, and only) neurologists have achieved this honor. occupational therapists and social work Neuropsychology professionals has earned this certification. CurePSP Centers of Care According to the American Board of Certified Dementia Practitioner (CDP) (among the first five in Clinical Neuropsychology (ABCN), its the United States) certification process is designed to CDP certification complements the assess scientific knowledge and clinical professional credentials and training “Partners in Care” skill, and to provide external evidence already obtained in one’s chosen from the National healthcare profession. A CDP Multiple Sclerosis of competence in the practice of Society neuropsychology. In 2022, 40% of certification reflects a deep personal (only program in those who had obtained this optional commitment, inspiring confidence in Southern Nevada) certification and practiced in Nevada a professional’s knowledge of quality were employed at our center. care for individuals with dementia. 13 New Thinking About Thinking Spring 2023
WORLD CLASS CARE New in 2022: “While a Center of Excellence is a source of Training, which is designed to increase pride to all recipients, more importantly, it’s an knowledge and build capacity for comprehensive, Parkinson’s Foundation indication to prospective collaborators — be they inter-professional care in the treatment of Center of Excellence patients, researchers or healthcare professionals Parkinson’s disease, focusing on: — of an organization’s aptitude and approach to We were honored to • Challenges in managing medication patient care,” says Zoltan Mari, MD, director of have been part of the and its side effects our Parkinson’s Foundation COE, with support Parkinson’s Foundation from Jenny Nguyen, APRN, and Stephanie • Non-pharmacologic management Center of Excellence Giuffre, RN. “We are proud to expand upon our strategies for non-motor symptoms (PF COE) awarded to work as Nevada’s first and only Parkinson’s • Support for people with PD and their Cleveland Clinic in 2018. Foundation COE.” families in self-management In 2022, the Lou Ruvo This sought-after COE identifies hospitals and • The unique and complementary role of Center for Brain Health in academic medical centers with specialized each discipline on the COE care team Las Vegas was named a teams — neurologists; movement disorders standalone COE — one specialists; physical, occupational and music Next up for our PF COE? Expand research, of only 51 sites globally. therapists; and behavioral health professionals infrastructure, patient support, community — at the leading edge of the latest medications, outreach and educational programming here therapies and innovations in Parkinson’s in Nevada. disease. As a team and individually, they meet the PF’s rigorous qualification requirements. To make an appointment with the neurology team at our Parkinson’s Foundation Center In October, our transdisciplinary team traveled of Excellence, call 702.483.6000. to Kansas for the Parkinson’s Foundation’s Team L to R: Janet Nacua-Peck; Jenny Nguyen, DNP; Lucille Carriere, PhD; Justina Selim; Angela Cesena; Becky Wellman, PhD; Jessica Grocott; Shehroo Pudumjee, PhD and Zoltan Mari, MD FELLOWSHIP FOR SPECIALIZED CARE As an academic health center, we contribute • Clinical Neuropsychology Postdoctoral to training the next generation of neurologists. The neuropsychology fellowship Medical school followed by four years of Ours are the only fellowship programs for boasts six graduates and two trainees. residency in neurology prepares a general these specialties in Nevada: (See page 21.) neurologist to care for patients across an array of conditions, from epilepsy • Behavioral Neurology and • Clinical Neuroimmunology and to spine to stroke to sleep to dementia to Neuropsychiatry (BNNP) Multiple Sclerosis neuroimmunology and more. Accredited in 2012, we have trained Our first fellow completed his training three fellows for careers in cognitive in June 2022; our second is actively At the Lou Ruvo Center for Brain Health, disorders to date, with another currently training with us. all of our neurologists have achieved on campus. additional specialization through a year or two of fellowship. clevelandclinic.org/Nevada 14
WORLD CLASS CARE In Families With Huntington’s Disease, an Agonizing Decision for Every Member Huntington’s disease (HD) is a devastating genetic disease passed down from one generation to the next, with notable symptoms including uncontrollable twitching of arms, legs or face. If one parent has the disease, you have a 50% chance of inheriting the gene; if you have the gene, you have a 100% chance of developing HD. Genetic testing for HD has a 99.9% accuracy rate, so a simple blood test will reveal your status. Yet, the decision to test is not a simple one. “We hope no one will take the test without the proper support network,” says Cleveland Clinic Lou Ruvo Center for Brain Health movement disorders neurologist Odinachi Oguh, MD. “Anyone can get testing at a lab with an order from a primary care provider but, in the aftermath, if it turns out the individual is positive, psychological grief with the coordinated expertise of three typically arises from the diagnosis.” clinicians, can help. spanning genetic discrimination, workplace issues, insurance and more And among those who are negative, she has Cleveland Clinic team members work in seen the downstream effects first hand: relief, concert to address key components with “Our clinic will walk you through the pros certainly, but often survivor’s guilt. Dr. Oguh those considering testing: and cons of seeking testing, from the explains: “You have relatives testing positive, • Movement disorders neurologist: practical financial considerations, such as but you didn’t. You’ve been spared because Discusses family history and evaluates purchasing enhanced insurance policies, you were randomly selected at birth to have for any subtle symptoms of HD to the psychosocial, notably the impact a negative gene. Your good news may leave • Health psychologist: Reviews patient’s in learning test results – whether negative you or others in your family feeling badly.” emotional health, family situation and or positive,” says Lucille Carriere, PhD, readiness for testing, and addresses Behavioral Health Director and Angie Ruvo Support for HD families the psychosocial aspects of receiving Endowed Caregiving Chair at the Lou Ruvo The estimated 300 individuals living with test results Center for Brain Health in Las Vegas. She HD in Nevada have family members who collaborates with genetics counselor Amy • Genetics counselor: Provides HD need to decide whether to test. That’s Shealy, MS, CGC, located at Cleveland genetics information and covers the where the multidisciplinary Huntington’s Clinic’s main campus in Ohio, and the pair benefits, limitations and risks of testing, Disease Predictive Genetic Testing Clinic, together present the results to the patient. If the test is positive… M A K E A N A PPOINTMENT Your movement disorders team will discuss best approaches for disease management. To make an appointment with our movement disorders team for the Huntington’s Disease Predictive Genetic Testing Clinic or the affiliated “Our goal is to arm individuals with the Huntington’s Disease Comprehensive Clinic, call 702.483.6000. information they need in time to make Learn more at clevelandclinic.org/NevadaMovement. important life decisions based on knowledge of their health status,” says Dr. Carriere. 15 New Thinking About Thinking Spring 2023
WORLD CLASS CARE Wondering About Wandering? A new environment can be disorienting to An underreported concern anyone. For people with dementia, even While around 20% of community-dwelling a place where they’ve lived for years can individuals with dementia and 60% of seem unfamiliar, frightening or disturbing. In those living in institutionalized settings such an uncomfortable situation, it’s human are reported to wander, “Wandering nature to want to return to familiar places is underreported and not addressed and people. as frequently as it should be,” says With dementia, that quest for comfort may Ms. Flores, who adds that the risk of manifest in a behavior known as wandering. wandering increases with severity of cognitive impairment, and that individuals A fairly broad concept, wandering doesn’t who wander multiple times a week almost refer just to individuals straying from home or always have at least moderate dementia. walking off on their own in public. Wandering can also happen within the home, in the form Wondering if OT can help with wandering of repetitive actions, pacing or expressing the that you’ve observed? Contact our need to "go home” when already there. neurorehabilitation team at 702.483.6032. Individuals may also have difficulty TIP locating familiar and essential places such See something, say something as the bathroom. They may inquire about Anyone would try to assist a lone the whereabouts of long-deceased loved Priscilla Flores, OTD, MSOTR/L wandering 3-year-old child; but what ones and past friends, or get nervous in about a senior sitting on a bus bench crowds, new settings, or even familiar but for hours? Or walking slowly, seemingly forgotten locations. without purpose? Consider notifying HOW TO REDUCE Partnering With OT your local police department. Your tip WA NDERING RISK S may help reunite a missing person with Family and caregivers can consider: Occupational therapy can help. Priscilla loved ones. Flores, OTD, MSOTR/L, an occupational • Redirecting or reducing access therapist (OT) at Cleveland Clinic Lou Ruvo — Detective Richard Tennant, Missing Persons Detail, Las Vegas through camouflage; for Center for Brain Health, explains: “OTs Metropolitan Police Department example, by placing a mirror can provide recommendations to decrease in front of exit doors, covering unsafe behaviors, support safety, and teach doorknobs or installing latches family, friends or caregivers to stop unsafe TIP out of the individual’s reach wandering in its tracks. OT's also assist with de-escalating unwanted behaviors Invest in a Medic Alert Foundation or line of sight. when needed.” ID bracelet (medicalert.org/alz ) • Installing interior alarms that alert The Alzheimer’s Association, in to departure from a safe zone. Caregivers can learn “to understand the collaboration with MedicAlert® signs of discomfort and make sure that the Foundation, provides nationwide • Disabling or patient’s basic needs — such as being fed, membership plans with 24/7 wandering locking up keys using the bathroom and pain relief — are support. The Association also has to vehicles. being met,” says Ms. Flores. “Caregivers can a 24/7 Helpline (800.272.3900) • Using GPS also explore meaningful activities to reduce available in more than 200 languages. trackers on the risk of boredom for the patient, such as It is staffed with clinicians who provide smart devices, encouraging walking or exercise programs, additional assistance for families living music, meaningful occupations or hobbies, or alert systems with Alzheimer’s and other dementias. social experience and purposeful tasks outside — Caroline Baumis, MSW, the home. around the home.” Alzheimer's Association clevelandclinic.org/Nevada 16
WORLD CLASS CARE Can You “Dual Task”? Physical and Cognitive Tasks Work Body and Brain Alone at the gym or in a physical therapy challenging and cause the task to be For example, explains Dr. Gevertzman, he (PT) appointment, we all want to use our less efficient; they can also lead to falls. might guide a patient to practice standing workout time as efficiently as possible, Skill building across the four physical from a chair, then repeat the exercise using working different areas of the body in and six cognitive domains can help. a chair that is higher or lower, then adding different sessions and multitasking, where (See callout box.) a dual-task component. Then, the PT might possible, to get an exercise “two-fer.” change the environment or add other goals Mix it up vs. pick it and stick with it to the task so that each set is unique. “In PT, we refer to With patients experiencing cognitive working the body decline, PTs sometimes use an exercise Yet, variable practice isn’t for everyone, and the brain approach known as variable practice, which is why specialized physical therapy simultaneously which loops back to previous tasks after comes in handy. as ‘dual-tasking,’” introducing new ones. says Christy Ross, “For those with a significant degree of PT, DPT, a Research supports cognitive dysfunction, ‘blocked practice’ board-certified the impact that — where tasks are performed multiple Geriatric Clinical variable practice times in a row in the same way — can Specialist. “We can make on be more effective than variable practice, may ask our patients to walk on the retention of a creating more carryover benefit when treadmill while naming places they’ve new skill, “either performing the same task again in the traveled or as many animals as possible. because it trains future,” says Dr. Gevertzman. In individuals with some level of cognitive the body for Our specialized physical therapists impairment, this approach not only different strategies are proficient in every approach (see maximizes our hour together, but simulates to improve a given page 13). what happens out in the ‘real world,’ such task, or because the task needs to be as the distraction of being interrupted reconstructed in the brain each time it is Wondering if targeted neurological with a question while walking through the performed in a new context,” says Michael physical therapy can help you? grocery store and searching for an item.” Gevertzman, PT, DPT, a board-certified Call our neurorehabilitation team Neurologic Clinical Specialist. “Alternating at 702.483.6032. Distractions in the real world may not tasks increases engagement and challenges only make everyday activities more the brain anew with each performance.” PH YSIC A L DOMA INS NEURO C O GNITIVE DOM A INS Balance Perceptual motor function Social cognition Strengthening (visual perception, (insight, contextually appropriate perceptual motor coordination) emotional reaction) Stretching Aerobic Language Complex attention (word finding, fluency, grammar (processing speed, divided attention) and syntax) Executive function Learning and memory (planning, decision making, (recall, recognition memory) flexibility, inhibition) 17 New Thinking About Thinking Spring 2023
WORLD CLASS CARE “Microhabits” Yield Macro Results in Personal Health We all have great ambitions to live healthier. However, if we don’t set our goals realistically, we may set ourselves up for failure, which leads to self-blame and decreased self-confidence. That’s where micro-habits, a term that has worked its way into the vernacular, can help. “Implementing small, everyday actions to improve your health is a great way to start,” says Dylan Wint, MD, Director, Cleveland Clinic Lou Ruvo Center for Brain Health. “Our advance practice providers, with their rich background in primary care and ongoing commitment to furthering their own health education, are astute advisers on practical habits.” Let’s see how they practice what they preach. Jenny Nguyen, DNP, APRN, FNP-C Simrit Kaur Saraon, DNP, APRN Nurse Practitioner, Movement Disorders Team Nurse Practitioner, Cognitive Disorders Team Without an adequate amount of sleep, mental and Learn something new. It could be as simple as brushing physical health can suffer. Not getting enough sleep your teeth with your non-dominant hand. There is a can also impact memory, work performance and growing body of evidence that learning new information interpersonal relationships. Good sleep tonight is the helps with neurogenesis. foundation for a good tomorrow. I’m currently challenging myself to learn to use a sewing I strive to do what I advise my patients: Get as close to machine, which is indeed a challenge! eight hours of sleep as possible. Maileen Ulep-Reed, PhD, APRN, FNP-BC Erin Wilkinson, MSN, APRN, FNP-C Nurse Practitioner, Cognitive Disorders Team Nurse Practitioner, Multiple Sclerosis Team It’s okay to take that time for self-care. Scheduled Exercise and physical activity can improve brain health, breaks are much needed to prevent burnout. None assist in managing depression and anxiety, improve mood, of us finds it easy. boost energy, promote better sleep, prevent falls, strengthen bones and muscles, and reduce certain health risks. I try to dedicate at least 30 minutes each day to sitting and enjoying my backyard. On the weekends, I enjoy riding my bike outdoors when the weather permits, I garden. as well as walking around outdoor craft fairs or farmers’ markets for a few hours on weekends. WHAT IS A NURSE PR AC TITIONER? At the Lou Ruvo Center for Brain and physician assistants — are trained prescribe drugs and order and interpret Health, we address brain disease to detect subtle changes in condition diagnostic tests, and are astute overseers through two important steps: accurate and adjust treatment plans accordingly. and strong communicators on the diagnosis provided by our physicians, relationship between overall health and expert disease management. Nurse practitioners (NPs) have advanced and neurological conditions. Each component requires unique degrees and are board certified; NPs at neurological specialization. our center have published research in To make an appointment peer-reviewed journals, have earned or with our neurology As our experts in ongoing disease are completing doctorate degrees and are team, contact us at management, the team’s advanced licensed as family nurse practitioners 702.483.6000 or practice providers — nurse practitioners who specialize in neurology. They can clevelandclinic.org/Nevada. clevelandclinic.org/Nevada 18
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