Issue link: https://viewer.e-digitaledition.com/i/464485
Neuromuscular Clinics As one of only 44 designated Muscular Dystrophy and ALS Research Centers— and one of just 40 ALS Association Certified Centers of Excellence — in the nation, the neuromuscular disorders clinics at UT Medicine serve more than 800 adult and child patients in South Texas each year. UT Medicine's neuromuscular clinics have treated more than 300 new patients in the past year, and nearly half of those are newly diagnosed with ALS. Created and led by Carlayne Jackson, MD, FAAN, Professor of Neurology and Otolaryngology, Assistant Dean of Ambulatory Services and Chief Medical Officer at UT Medicine in San Antonio, these multidisciplinary centers balance clinical trials and research with a keen focus on patient care. "Scientific breakthroughs in the laboratory cannot move forward toward FDA approval without the involvement of patients willing to sacrifice their time in clinical trials. Due to the large number of patients we follow at UT Medicine with neuromuscular diseases such as myasthenia gravis, ALS and muscular dystrophy, we have been involved in more than 30 clinical trials in the past 10 years." — Carlayne E. Jackson, MD, FAAN, Professor of Neurology and Otolaryngology; Assistant Dean of Ambulatory Services; Chief Medical Officer, UT Medicine San Antonio Epilepsy specialists, surgeons, psychiatrists, neuropsychologists, physician assistants and nurses meet weekly at the Epilepsy Surgery Case Conference to review and discuss the care plan for surgery candidates. David Jimenez, MD, Chair of Neurosurgery, reviews a case prior to craniosynostosis surgery. The MD/ALS clinics embody a true multidisciplinary approach every day, as practitioners and clinicians move from patient to patient to proactively meet ever-changing needs in respiratory care, swallowing and weakness due to disease progression. "Every clinic is focused on a specific neuromuscular condition, and every patient's needs are different. Each patient is in a private room and sees providers representing all relevant disciplines," says Pamela Kittrell, MSN, RN, Clinical Research Nurse-Senior in the Department of Neurology. "We espouse practice guidelines of multidisci- plinary care that make a difference in patients' longevity." Recent research efforts at the neuromuscular disorder clinics in both drooling and pseudobulbar affect — uncon- trollable emotional outbursts — have been beneficial in supporting the use of medications to treat such effects of neuromuscular diseases. "These medicines do not cure the root condition, but they make a big difference in symptoms and quality of life for patients," Kittrell says. "We routinely employ standard-of-care therapies and expedite them to make the most difference." Although there is no cure for ALS, UT Medicine's ALS Clinic continues riluzole therapies, the only FDA-approved medication to treat ALS. Research efforts focus on creating better outcomes for all neuromuscular disorders. Collaborative Care, Collegial and Familial There are many ways to participate in UT Medicine's diverse neurological and neurosurgical network: referring a patient, becoming a spoke in the telestroke program, or joining in a conference or research effort. Whatever the connection, when providers collaborate with the UT Medicine neurologists and neurosurgeons, they are helping make advanced levels of care more accessible in the greater South Texas community. "When patients can be cured, that's the best outcome any of our programs can attain," Dr. Brey says. "One area