A CASE FOR SUPPORT
UC Neuromuscular Center
“Clinical care and research are inherently interconnected, each enhancing the other to ensure patients receive the most advanced and comprehensive treatment possible. We are working to find the first treatments for rare neuromuscular diseases, because for many of our patients, clinical research is a critical source of hope.”
HANI A. KUSHLAF, MD, MS Professor of Neurology and Pathology Director of the Neuromuscular Division Director of Neuromuscular Research
Dear friend,
Over 1.5 million people in the U.S. are impacted by neuromuscular disorders—conditions that affect the peripheral nervous system, which controls the body's voluntary muscles and the nerves that communicate sensory information back to the brain. These disorders can cause muscle weakness, fatigue and other symptoms that may progress over time.
As part of the University of Cincinnati Gardner Neuroscience Institute, the UC Neuromuscular Center provides a coordinated network of care to support patients living with conditions like muscular dystrophy, myasthenia gravis and amyotrophic lateral sclerosis (ALS), all while searching for a cure through research and national partnerships.
Our strengths:
• Patients are supported by a collaborative care team of nurses, genetic counselors, physical and occupational therapists, speech and language pathologists, respiratory therapists, dieticians and social workers with extensive knowledge and experience with neuromuscular disorders.
• Subspecialists in cardiology, pulmonology, gastroenterology, ENT, physical medicine and rehabilitation, radiation oncology, psychiatry and surgery round out our team for specific patient care needs such as Botox for spasticity, or radiation for sialorrhea.
• Our clinics have earned national recognition for excellence in care from several health organizations for neuromuscular diseases, such as ALS United and the Muscular Dystrophy Association. These collaborations keep us at the forefront of research and care, continually striving to improve the lives of those affected by these conditions.
• UC Health offers access to enrollment in national clinical trials. Every patient in our clinic is evaluated for potential participation in research.
From our specialized inpatient neurology services to our national research pursuits, we are dedicated to maximizing the quality of life for our patients and their families. Thank you for your interest and thoughtful consideration to partner with our team and help neuromuscular patients get the best care possible.
Hani A. Kushlaf, MD, MS Professor of Neurology and Pathology Director of the Neuromuscular Division Director of Neuromuscular Research
RESEARCH
Growing and retaining top talent
At the UC Gardner Neuroscience Institute, our faculty leaders bring an evidence-based focus to everything we do. To attract rising-star researchers and expand our quests for discovery, we must evolve our resources to maintain the fast pace required for continual health care innovation.
Endowed chairs for clinical leadership and research faculty
Historically, endowed chairs were a want-to-have luxury, today they are a need-to-have tool in order for UC to be competitive with other nationally ranked academic medical centers. Chairs are essential to our ability to recruit and retain top talent among a competitive field of other neuroscience institutes. Establishing new chairs builds permanency and sustainability in our areas of excellence:
Clinical leadership advances the specialty care areas of neuromuscular diseases. Endowed clinical chairs also help to recruit, retain and organize clinical teams around the subspecialty care needs of our patients.
Neuroscience research chairs expand clinical trials and basic neuroscience research to enable the discovery of new medications and treatments, and protect time for physicianscientists to balance patient care with research and teaching. An endowed research chair allows us to recruit new thought leaders and retain vital faculty which ensures continuity of important research efforts at the university.
Paired with our advanced facilities and research operations, endowed chairs will attract nationally and globally recognized faculty to the UC Gardner Neuroscience Institute. This accelerates the research and development of new treatments, all to directly benefit more patients.
Expanding research for improved outcomes
MRI research technology
MRI scans are now a key component of clinical research trials at the neuroscience institute— including in neuromuscular diseases, Parkinson's disease as well as stroke, epilepsy and memory disorders. Neuroimaging research allows a physician or researcher to evaluate a patient’s baseline or see how they respond to new medications or therapies. To support our robust research efforts, the institute is in need of a dedicated research scanner.
An MRI focused entirely on research, with staff trained in neuroinformatics and the latest imaging techniques, will broaden our discovery efforts across all specialty areas. The outpatient facility (that opened in 2019) was built to accommodate an additional MRI with researcher staffing space.
For example, the Cincinnati Cohort Biomarker Project, led by Alberto Espay, MD, involves a comprehensive collection of health data. It requires many MRI scans per year for its more than 800 study participants. With the evolution of personalized medicine our team now takes multiple images throughout a patient’s care journey to evaluate in real time how they are responding to medicine or therapies.
Research endowment fund
Neuroscience is the most prolific research area throughout the academic health center and the entire university. Creating a substantial research endowment will encourage further cross-disciplinary projects across departments and centers and can spark “high-risk/highreward” ideas that are less likely to find support through conventional grant funding.
Pilot grants are the mustard seeds of research. Their results lead to much larger grants from the National Institutes of Health and other external foundations.
For example, $925,000 in pilot grant funding from 2014 to 2020 resulted in $16,236,369 in monies from the government and external foundations—a 17 to 1 return on investment.
A research endowment fund is critical to progress and will allow investigators to pursue more novel, long-term and untested research projects, giving them the security to take the risks that will yield breakthrough discoveries right here in Cincinnati.
Tracking the ALS journey
ALS care presents many challenges, but the biggest is that most ALS patients succumb to the disease within three to six years of showing symptoms. There’s only so much time to get the best and most appropriate care for each individual patient and for researchers to get crucial data on disease progression. For a disease with a 100% mortality rate, every breakthrough counts.
Under the direction of Robert Neel, MD, professor of neurology, the Hugh H. Hoffman ALS/ Motor Neuron Disease Multidisciplinary Clinic is tracking the course of the disease in each patient, collecting clinical and genetic information. This database will help identify patterns of specific disease markers and milestones, which will inform real-time patient care and result in more effective treatment of the multiple medical issues patients face.
As part of this, Dr. Neel is monitoring patients who have lived for 20 years or more with slow progression of ALS. For a disease that hasn’t made as many strides in research and development like other diseases, this comprehensive database could reveal trends and identify protective genes and patterns that predict clinical needs sooner.
There is so much work to be done to find a cure for this disease, but research studies like this one can create breakthroughs that improve outcomes and quality of life for all ALS patients.
Finding the first treatments for rare neuromuscular diseases
Our research teams, led by Dr. Kushlaf, conduct studies to better understand and find new treatments for rare neuromuscular diseases like myotonic dystrophy, Becker muscular dystrophy, myasthenia gravis, CIDP, ALS and multifocal motor neuropathy. These immunemediated and genetic disorders can cause progressive muscle weakness and have few to no existing options for treatment.
We have collaborated with researchers at Cincinnati Children’s to investigate new biomarkers in patients with myotonic dystrophy type 1, as well as launched some of the first clinical trials for rare neuromuscular diseases like myotonic dystrophy type 1 and Becker muscular dystrophy. These studies show promise in bringing the first-ever treatments to patients with these forms of muscular dystrophy.
CLINICAL CARE
Grow our patient data infrastructure, strengthen services for our centers of excellence, creating a national destination for care
The power of big data: Improving patient outcomes
To offer truly world-class care for our patients, we need to rely on not just the expertise of one doctor, but leverage the expertise of every single doctor in our institute and beyond. We must continue to scale our approaches to personalized treatment for our patients, understanding that care is unique to each individual.
With the vast amount of health data now available, a physician has millions of data points at their fingertips. The flow of new information never stops as biomedical knowledge from new research doubles every 73 days. However, the time lag from putting new knowledge into practice currently takes more than a decade.
The UC Gardner Neuroscience Institute is building an integrated network of research, clinical data and quality improvement processes that will rapidly deliver new learnings to the bedside, vastly improving patient care and quality and longevity of life.
This network will connect all of our centers of excellence, and eventually connect us to peer neuroscience institutes like the top-ranked Weill Institute at UC San Francisco. These connectors multiply the expertise of our institute, identifying new approaches and treatments that will improve patient outcomes not only in our region, but worldwide.
Adopting a big data approach to care
Before
• Average 17 years from evidence to practice.
• Lacks patient input and learned experience.
• Disparities in practice, decision-making.
• Measures process with outcomes.
After
• Less than 3 years to apply new evidence to patient care.
• Patient-driven research and resources.
• Aligned use of best practices, efficient and accessible evidence.
• Measures real-time patient outcomes, to continuously modify care.
Leveraging big data
This approach to care will measure real-world outcomes from our patients and make immediate and continuous improvements to the system as a result. Our leaders have already demonstrated how an integrated, data-driven approach can optimize patient outcomes for brain and mental health care.
For example, UC’s epilepsy team has focused on controlling seizures and reducing patient barriers to medication. By partnering with patients to identify common issues, 30% of epilepsy patients were found to have at least one barrier to medication—including access or cost, forgetting to take the medication, or not taking it due to side effects.
With patients contributing data in between visits, through wearable apps, surveys and/or seizure diaries, it drives both quality improvement and research. The care teams can view all of this in a digital dashboard to look for patterns and make immediate adjustments to a patient’s treatment plan.
“Getting to the truth of a patient’s problem and how best to cure it, requires data scientists, analysts and biostatisticians—people and tools that aren’t normally part of the healthcare model. And I think this is where philanthropy and the generosity of our community and patients can make a big impact.”
JOSEPH CHENG, MD
Associate Director for UC Gardner Neuroscience Institute
Frank H. Mayfield Endowed Chair & Professor of Neurosurgery
Enhanced clinical services
Expanding talented, highly trained staff is crucial to provide the most comprehensive care to our patients and their caregivers. In addition to our physician leaders, these key roles include:
• Nurse navigators and social workers who provide essential clinical expertise and guidance to the community and other resources for patients, particularly those managing complex conditions.
• Genetic counselors who are essential in navigating genetic testing, obtaining genetic testing authorizations and assisting with family counseling and testing family members for patients with genetic neuromuscular disorders and ALS.
• Physical therapists, occupational therapists and speech and language pathologists who understand neuromuscular patients with unique mobility needs and have expertise in assistive technology and work/home adaptive technology.
• Counselors who specialize in the mental health care needs of our neuromuscular patients.
• Dietitians who understand the balancing act of nutrition and weight gain/weight loss, a pivotal function for neuromuscular patients.
As our patient outcomes continue to excel, new technology and comprehensive services in support of the whole person will evolve across the institute. Our current priorities include:
• State-of-the-art imaging capabilities such as a non-gravity dependent upright MRI for our patients, improving the patient experience and quality of imaging to assess diagnosis and timely treatment.
• Supportive technology for patient care and research, including speech generation devices, eye gaze equipment and pulmonary equipment.
• Integrative medicine programs and clinics offered by the Osher Center for Integrative Health at UC, providing complementary therapies like classes for nutrition, exercise and mindfulness.
Nationally recognized for excellence in care
Our clinics have earned national recognition through partnerships with the following associations and foundations:
• ALS United
• ALS Association
• Northeast ALS Research Consortium
• Muscular Dystrophy Association
• Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Center of Excellence for the care of patients with CIDP
• Charcot-Marie-Tooth Association Center of Excellence
• Myasthenia Gravis Partner in Care by Myasthenia Gravis Foundation of America (MGFA).
“Balancing the daily medical care of patients while looking for answers requires patience, persistence and positivity. I want the Hugh H. Hoffman ALS/Motor Neuron Disease Multidisciplinary Clinic to be the home for the best multi-disciplinary clinical care and research potential for patients with ALS in our region—it is our responsibility to serve these patients and to move the needle on potential treatments.”
ROBERT W. NEEL, MD Professor of Neurology Director, Hugh H. Hoffman ALS/Motor Neuron Disease Multidisciplinary Clinic
EDUCATION
Building excellence in care, training, specialized staffing
In the hospital setting, talented nurses, resident physicians and support staff, often spend more time with patients and families than the attending physicians. These expert care teams provide compassionate, research-driven care to the bedside—and are a key component to becoming the neuroscience institute by which all others are measured.
Nursing endowment and expansion of programs
The demand for neuroscience nurses is high, due in part to an aging patient population and a growing rate of neurological conditions, paired with a national nursing shortage. This high demand is also due to the extensive and ongoing requirements for continual, progressive education and skills training that nurses need to provide care in the neurological specialty and stay abreast of evolving advances and technologies.
An endowment fund will build opportunities for nurses to train, advance and contribute to the science of neurological care, further positioning our institute as a national leader in treating complex neurological problems.
Fellowship positions
One and two-year postgraduate training programs provide the opportunity to advance in a subspecialty area of neurological care. Fellowship positions will include MDs but also extend to opportunities for physician assistants and nurse practitioners who wish to pursue specialized training. Fellows will work in outpatient, inpatient and ICU settings across all subspecialty areas of clinical neurology and neurosurgery.
The Neuromuscular Medicine Fellowship program is a one-year ACGME-accredited program designed to provide expertise in the diagnosis and management of diverse neuromuscular disorders including ALS/motor neuron disease, myasthenia gravis, Lambert-Eaton Myasthenic Syndrome, CIDP, Pompe disease, muscular dystrophies and Charcot-Marie-Tooth disease.
Unlike residency programs, funding for fellowships is not typically covered by federal programs like Medicare. We rely on philanthropy and other efforts to provide the funding to train the next generation of subspecialists.
Education and training programs
The UC Gardner Neuroscience Institute is a magnet of talent, attracting out-of-state high school graduates and potential graduate students to Ohio with the promise of a world-class education, mentors in research and industry, and access to leading laboratory and clinical facilities. We plan expansion and support of the following areas:
• Simulation lab space and training support
Several of the top programs in the country use simulation-based training: realistic clinical environments that blend learning with virtual and hands-on experiences through a model of team-based patient care. At UC, leadership from across the academic health center and UC Health have articulated a high-level vision and operational model for a simulation center that will teach not only basic procedures but also complex neurological care skills.
• Student recruitment and programming
The UC College of Medicine is committed to building a physician workforce that accurately reflects the community we treat. Our mission is to recruit and retain the most talented students, residents and faculty to our academic medical center and support them in pursuing neuroscience specialties.
• Continuing medical education
Training programs will provide continuing medical education in our areas of excellence. New programming will offer primary care physicians opportunities to enhance learning in often requested specialties like depression and anxiety.
MEASURES
OF SUCCESS
Philanthropic support will speed our time to impact in the areas of research, patient care and training the next generation. We will track and measure our success in these areas through improved scores and metrics in:
Research
Our research portfolio will grow and be measured by: the number of publications in top level journals, faculty presentations at conferences and scores/rankings from the National Institutes of Health and Blue Ridge Rankings. Additionally, we will track membership growth in premier research networks such as StrokeNET, Mood Disorders and the Alzheimer’s Disease Research Centers (ADRCs).
Clinical
Investments into personalized medicine and clinical advancements will be measured by: improving patient outcomes (relevant to a patient’s quality of life including symptoms, functionality, and physical, mental and social health), impacting key hospital metrics like decreasing mortality and re-admissions rates, and improving patient safety and satisfaction. These will additionally support our reputation rankings in mass media outlets like U.S. News and World Report.
Education
Being a destination for complex neurological care also means being a destination for the best and brightest talent—from students pursuing our residency and specialty fellowship programs to new clinicians and researchers. As demand increases for limited spots (for example, hundreds of fellowship applicants for 10 openings), so will competitiveness and the strength of applicants, along with the quality of care and research across the institute. Professional physician networks like Doximity and professional organizations like Association of American Medical Colleges will help us measure this.
THANK YOU
We’re grateful for your thoughtful consideration of a leadership gift to UC’s Neuromuscular Center and Hugh H. Hoffman ALS/Motor Neuron Disease Multidisciplinary Clinic in support of our 10-year Vision for Neuroscience.
CONTACT
Chris Higgins
Vice President for Development, Academic Health Enterprise
University of Cincinnati Foundation
Chris.Higgins@foundation.uc.edu
614-246-1585
Heather Sherwood Director of Development
University of Cincinnati Foundation
Heather.Sherwood@foundation.uc.edu
513-558-6769
To learn more about how philanthropy can make a meaningful impact, scan the QR code or visit foundation.uc.edu/ucgni/ALS