May is ALS Awareness Month. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. ALS is referred to as Lou Gehrig’s disease, after the famous baseball player who was diagnosed with the disease in 1939. While the definitive cause of ALS is unknown, between 5% to 10% of individuals diagnosed with the disease are considered to have inherited it, with what is called familial ALS.

ALS Care at Atrium Health

As part of the Atrium Health Neurosciences Institute, the Carolinas Neuromuscular/ALS-MDA Center is one of the Southeast’s most comprehensive programs for the study of degenerative neuromuscular diseases. The Neurosciences Institute offers leading-edge diagnosis and treatment for neuromuscular disease and is dedicated to providing patients with ALS with aggressive medical care, education and encouragement.

The Center has two translational research laboratories: the Carolinas Neuromuscular/ALS Research Laboratory and the McColl-Lockwood Laboratory for Muscular Dystrophy Research. The Carolinas Neuromuscular/ALS Research Laboratory examines areas of therapy development, motor neuron cell biology and diagnostic test development for neuromuscular diseases, particularly ALS, and maintains an extensive biospecimen and tissue repository to provide samples for research.

Advancing Care Through Philanthropy

Pictured (left to right): Sara Piner, Director of Gift Planning at Atrium Health Foundation, Shivangee Thorne, MSW, Atrium Health Neurosciences Institute, Darlene Orman and Leo F. McCluskey, MD, Atrium Health Neurosciences Institute.

An individual who lived life to the fullest, Billy Orman was a devoted family man and friend to many. Following a diagnosis with ALS, Billy moved from Auburn, New York, to Charlotte and became a patient of Benjamin Brooks, MD, medical director of the Neuromuscular/ALS-MDA Center. His loved ones and friends carry on his legacy today through the Billy-O Golf Tournament, which raises vital funds to support the Carolinas Neuromuscular/ALS-MDA Center at Atrium Health. After his passing, Billy’s family members and friend John Taylor established the annual golf tournament as a tribute to Billy and his love of the sport.  

In 2020, the Billy-O Golf Tournament raised $15,000 to benefit ALS research conducted at the Carolinas Neuromuscular/ALS-MDA Center under the leadership of Leo F. McCluskey, MD, to advance the diagnosis and treatment of ALS and neuromuscular disease.

With support from philanthropy, the Carolinas Neuromuscular/ALS-MDA Center is now one of the most comprehensive ALS and muscular dystrophy facilities in the United States. Most importantly, community support has helped the Center earn international recognition for its clinical expertise and pioneering medical research, including designations among a select group of medical institutions to offer Phase III studies for ALS patients.

Click here to learn more about Neuromuscular ALS Research being conducted at the Carolinas Neuromuscular/ALS-MDA Center.

To support the work being done by the Atrium Health’s Neurosciences Institute:

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