Kentucky Neuroscience Institution recognized as Muscular Dystrophy Association Care Affiliate Center
Congratulations to the Kentucky Neuroscience Institution at the University of Kentucky for gaining recognition as a Muscular Dystrophy Association Care Affiliate Center!
This joint effort between Dr. David Toupin, Dr. Michael Hendricks and Dr. Nakul Katyal helps expand access to specialized neuromuscular care by connecting patients with multidisciplinary teams, facilitating participation in research opportunities, and providing high-quality care closer to home.
What is muscular dystrophy?
Muscular dystrophy refers to a group of genetic disorders that cause degeneration of muscle fibers, leading to progressive weakness. Other neuromuscular conditions may affect muscles in different ways, or may affect nerves, motor neurons, or the neuromuscular junction. These distinctions are important because they influence diagnosis, treatment options, and long-term expectations. Proper diagnosis ensures patients receive the correct care.
Diagnosis begins with a detailed medical history and neurological examination, followed by specific testing. Tests may include blood work, nerve conduction tests and EMGs, muscle biopsy, or genetic testing. In other cases, muscle imaging may be helpful. Establishing an accurate diagnosis allows care to be tailored to the patient and their family.
What makes UK HealthCare’s neuromuscular program stand out?
UK HealthCare combines world-class neuromuscular expertise with a deep understanding of the unique needs of Kentuckians. Our neuromuscular team tailors our treatment plans to each patient’s specific situation. We also collaborate across specialties within our institution and with other major academic medical centers. Patients coming to UK HealthCare can be reassured that they will benefit from the most advanced available therapies, with an approach suited to them.
What is the Muscular Dystrophy Association and why is it important at UK HealthCare?
The Muscular Dystrophy Association (MDA) began with a mission to support individuals and families affected by muscular dystrophy. Over time, MDA’s mission expanded to include care, research, and advocacy for the full range of neuromuscular diseases.
Recognition as an MDA Care Center Affiliate reflects a commitment to excellence in the diagnosis and management of all these neuromuscular diseases. It means that we uphold a high standard of specialized, multidisciplinary care. Patients at our clinic will benefit from coordinated access to expert providers, evidence-based treatments, and opportunities to participate in clinical trials and research. Our involvement with the MDA also promotes collaboration within a national network, and drives continued innovation at UK HealthCare.
What treatments are available through this MDA-recognized clinic?
Although most neuromuscular disorders do not have a cure, patients today benefit from treatments that can slow progression and improve quality of life. For example, biologic therapies for myasthenia gravis or gene therapies for Duchenne muscular dystrophy and spinal muscular atrophy can dramatically alter the course of disease. But even when advanced treatments are not an option, receiving care through a multidisciplinary clinic can result in longer, healthier lives.
Coordinated care allows for earlier identification and management of complications. Working as a unified team ensures that care plans are individualized, consistent, and responsive to disease progression.
Signs you should see a doctor
Anyone with a known neuromuscular diagnosis should be followed at an MDA-recognized neuromuscular clinic. For those who don't yet have a diagnosis, symptoms can vary.
Conditions like muscular dystrophy may present with progressive muscle weakness, with onset in childhood or adulthood. Symptoms can include:
- difficulty walking, climbing stairs, running, or getting up from the floor
- frequent falls,
- muscle fatigue
- delayed motor milestones in children
Other neuromuscular disorders can have similar symptoms. In short, all unexplained weakness warrants evaluation. Evaluation at an MDA-recognized neuromuscular clinic can help clarify the cause and guide care.
What can families expect from an MDA Affiliate Care Center that may be different from other care settings?
Families can expect an MDA Affiliate Care Center to deliver integrated, team-based care in one convenient location, allowing patients to see multiple providers during a single visit. In addition to medical specialists, the multidisciplinary team includes physical and occupational therapists who focus on improving mobility, promoting independence, and supporting daily activities.
This collaborative model minimizes the need for separate appointments at multiple sites, and ensures care plans are personalized, seamless, and carefully coordinated across disciplines.