UC Neuromuscular Center

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1 UNIVERSITY OF CINCINNATI NEUROSCIENCE INSTITUTE FY 2015 ANNUAL REPORT

FY2015 ANNUAL REPORT WELCOME The 2014-2015 fiscal year was one of excitement, transition and new possibilities for people with neuromuscular disorders.

UC Health. Our elevated designation brought added luster to our role as the region s destination for diagnosis and treatment of adult neuromuscular disorders.

2 FY2015 ANNUAL REPORT WELCOME The fiscal year was one of excitement, transition and new possibilities for people with neuromuscular disorders. This was the year that we transitioned from a program to one of the 11 centers of excellence at the University of Cincinnati Neuroscience Institute, a collaboration of the UC College of Medicine and UC Health. Our elevated designation brought added luster to our role as the region s destination for diagnosis and treatment of adult neuromuscular disorders. Becoming a center of excellence gives assurance to our patients that we provide the best neuromuscular care. It will help in the long term to raise awareness for these poorly understood diseases and to help us advance in three core areas: research, treatment and education. Indeed, neuromuscular diseases, which rob people of their muscle strength and often their lives, are largely confined to the shadows. Less common than neurological conditions such as stroke and Parkinson s disease, they are often described as orphan diseases, and they are less apt to attract headlinemaking donations. The Ice Bucket Challenge changed that for at least one neuromuscular disorder amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig s disease when it became an Internet sensation. Several of my colleagues, including Dr. Rob Neel, director of our UC Health ALS Clinic, got soaked for the cause. On the research front, we moved forward toward our goal of offering our patients promising new treatments through clinical trials. And in the area of philanthropy, we celebrated our first $100,000 gift. We also applauded the James J. and Joan A. Gardner Family Foundation s transformational $14 million commitment to the UC Neuroscience Institute to help fund a new, state-of-the-art facility to enhance treatment and research efforts for chronic and progressive neurologic disorders. The contribution was the second major gift to the UC Neuroscience Institute from the Gardner Family Foundation, and it coincided with the institute s 15th anniversary. We are proud of our accomplishments during fiscal They reflect the hard work of our clinicians, scientists, and associates; they reflect the commitment and support of our generous supporters; and they reflect our heightened collaboration with regional organizations, including the Southern Ohio Muscular Dystrophy Association and the ALS Association of Central and Southern Ohio. Together, we are making a difference in the lives of people affected by neuromuscular disease. John Quinlan, MD Professor of Neurology and Rehabilitation Medicine Medical Director 1

3 UNIVERSITY OF CINCINNATI NEUROSCIENCE INSTITUTE This year we joined the Northeast ALS Consortium, known as NEALS, an international research consortium of 100 members. Membership positions us for acceptance into ALS clinical trials. We have begun screening dozens of potential ALS studies and are seeking to participate in promising studies that are actively recruiting and looking for new centers. Highlights The continued to treat patients for a wide variety of neuromuscular disorders, including acquired neuropathies, amyotrophic lateral sclerosis (ALS), cervical and lumbar radiculopathies, Charcot Marie Tooth disease, Guillain-Barre, inflammatory myopathies, metabolic myopathies, muscular dystrophy, myasthenia gravis and neuromuscular junction disorders, and spinal muscular atrophy. Advanced subspecialty training enabled our physicians to perform electromyograms (EMG), the diagnostic test of choice for delineating neuromuscular disorders. Our advanced diagnostics also included 1) single-fiber electromyography, a selective EMG recording technique primarily used in the diagnosis of patients with ocular myasthenia gravis and difficult-to-diagnose neuromuscular junction disease; 2) nerve and muscle ultrasound, a noninvasive imaging test that is useful in the diagnosis of focal nerve diseases; and 3) comprehensive autonomic testing. Our new autonomic disorders laboratory, directed by Jason Heil, MD, is the only neurology autonomic laboratory in the region. The continued to serve as the Southern Ohio Adult MDA Clinic, providing health care services for people with more than 42 neuromuscular disorders from Southern Ohio, Northern Kentucky and Eastern Indiana. Headed up by John Quinlan, MD, the MDA Clinic served 600 adults. Through a grant from the MDA Association, the Clinic helped defray the cost of selected services for patients who qualified. Our UC Health ALS Clinic, held two half-days per month at Daniel Drake Center for Post-Acute Care, provided patients and their families with comprehensive care from a physician and therapists during a single, 3- to 4-hour visit. Sixty individual patients were treated at the ALS Clinic during FY15. We collaborated with the Drake Center Wheelchair Clinic, which helps patients gain access to a chair that matches their size and needs. We continued our study of rituximab in myasthenia gravis. The purpose of this study, led by Laura Sams, MD, is 1) to find out whether rituximab is effective and safe in people with myasthenia gravis who are also taking prednisone and 2) to determine whether rituximab will help people take less prednisone to manage their myasthenia gravis or possibly be able to stop taking prednisone. The UC Department of Neurology and Rehabilitation Medicine received approval (beginning July 1, 2015) for a new neuromuscular medicine fellowship from the Accreditation Council for Graduate Medical Education (ACGME). The fellowship, directed by Hani Kushlaf, MD, is one of only 44 accredited neuromuscular fellowships in the United States. Rob Neel, MD, and John Quinlan, MD, were honored with the two Silver Apple Awards for teaching excellence at graduation ceremonies for the UC College of Medicine. 2 UCHEALTH.COM/NEURO UCNI

FY 2015 ANNUAL REPORT Financials and Donations Harry Tim Brown honored his wife and soul mate during her final years by stepping firmly into the role of primary caregiver.

After Linda Link Brown passed away from amyotrophic lateral sclerosis (ALS) last fall at the age of 64, Tim honored her again with a generous $100,000 gift to the ALS Fund at the Neuromuscular Center

4 FY 2015 ANNUAL REPORT Financials and Donations Harry Tim Brown honored his wife and soul mate during her final years by stepping firmly into the role of primary caregiver. He installed chair lifts and wheelchair ramps, rearranged the house, administered medication and nutrition through a feeding tube, and treated his wife to one last memorable cruise. After Linda Link Brown passed away from amyotrophic lateral sclerosis (ALS) last fall at the age of 64, Tim honored her again with a generous $100,000 gift to the ALS Fund at the Neuromuscular Center at the University of Cincinnati Neuroscience Institute. The funds will be used to support the UC Health ALS Clinic and the social and therapeutic services that are vital to families who are coping with ALS, a progressive motor neuron disease for which there is no cure. Donations and Research Other Support DONATIONS FY2015 Clinical Revenue $763,600 Research Revenue $13,626 Health System/University Support $70,754 Community Support $124,007 Other Support $26,125 TOTAL $998,112 Community Support Clinical Revenue Health System/University Support Research Revenue Donor Recognition $100,000-$249,999 Harry C. Brown $25,000-$49,999 Barbara V. Peck/Justin Friedman Fund 3

UNIVERSITY OF CINCINNATI NEUROSCIENCE INSTITUTE Team Physicians John Quinlan, MD, Medical Director Jason Heil, MD Hani Kushlaf, MD Robert Neel, MD Laura Sams, MD Nurses and Medical

funds for the Muscular Dystrophy Association at the Muscle Walk.

5 UNIVERSITY OF CINCINNATI NEUROSCIENCE INSTITUTE Team Physicians John Quinlan, MD, Medical Director Jason Heil, MD Hani Kushlaf, MD Robert Neel, MD Laura Sams, MD Nurses and Medical Assistants Martha Freeman Patty Garrison Ashley Fisher Research Coordinator Alecia Boehl Drake Center Team Occupational Therapists Connie Buda Jim Ives The UC Health Myoblasts raised funds for the Muscular Dystrophy Association at the Muscle Walk. Physical Therapists Jennifer Cruse Renee Loftspring Respiratory Therapist Anne Compton Speech Therapist Courtney Anness Clinical Coordinator Caroline Quinter Social Worker Yvonne Dressman Team UC Health raised funds for the ALS Association at the Walk to Defeat ALS. 4 UCHEALTH.COM/NEURO UCNI

6 For more information or to donate please contact Peggy A Hearn Director of Development UC Neuroscience Institute Peggy.Ahearn@uc.edu Kathy Nullmeier Associate Director of Development UC Neuroscience Institute Kathy.Nullmeier@uc.edu

1/28/2019. OSF HealthCare INI Care Center Team. Neuromuscular Disease: Muscular Dystrophy. OSF HealthCare INI Care Center Team: Who are we?

1/28/2019. OSF HealthCare INI Care Center Team. Neuromuscular Disease: Muscular Dystrophy. OSF HealthCare INI Care Center Team: Who are we? Neuromuscular Disease: Muscular Dystrophy Muscular Dystrophy Association (MDA) and OSF HealthCare Illinois Neurological Institute (INI) Care Center Team The Neuromuscular clinic is a designated MDA Care