BOSTON – Panagiotis-Raphael Glossiotis, an 18-month old child from Greece, has been diagnosed with spinal muscular atrophy, also known as SMN1, and is due to arrive in Boston on November 14 to receive treatment at the famous Boston Children’s Hospital by the internationally renowned Greek-American doctor, researcher, and professor of medicine at Harvard University Dr. Basil Darras.
The doctor’s full title is: Associate Neurologist-in-Chief; Chief, Division of Clinical Neurology; Director, Neuromuscular Center and Spinal Muscular Atrophy Program Professor of Neurology, Harvard Medical School.
According to various publications Dr. Darras, who was born on the island of Samos in Greece, is the leading expert in his field. He is friendly, accessible, and polite with much love in his heart for Samos, which he visits every year.
Without referring specifically to Panagiotis Glossiotis, Dr. Darras told The National Herald that “SMA is a progressive, rare genetic disease that is caused by a survival motor neuron 1 (SMN1) gene that is missing or not working properly,” adding that researches are working on how SMA is inherited, the role of the backup gene, and the signs and symptoms of SMA.”
SMA is an autosomal recessive disorder, meaning that a person must inherit one copy of a nonworking or missing gene from each parent to have the disease.
Dr. Darras says that “during my childhood in Greece, my parents instilled in me intellectual curiosity, the ambition to excel, and personal values focused on service. My approach to care reflects my interest in the genetic basis of neurological disease and my desire to practice on the forefront of clinical care and research…I was strongly influenced by a number of doctors in my family. One of my uncles would let me watch him treat patients and help him give immunizations in schools.”
He earned Greece’s highest marks on nationwide tests to be admitted to medical school, and graduated from Athens University School of Medicine at the top of his class. “But I became frustrated by the system that controlled access to further training in pediatrics,” he said. “I was required to wait three to four years, so I came to the U.S. for my residency. I had planned to return to Greece, but stayed in the U.S. due to the enormous opportunities here to do research and care for patients at the highest possible level. I am motivated to find cures for children with neuromuscular disorders. I have trained and published extensively as a basic scientist, but was not fulfilled by researching and diagnosing patients alone without helping to improve their lives and outcomes. As a result, I've become very active in clinical research and am excited to be practicing and researching at a time in the field when powerful new resources are at our disposal.”
He added that “my special focus is in the care of children with neuromuscular conditions originating from inherited or acquired conditions of the motor unit. These include patients with complex muscle diseases like muscular dystrophies and congenital or metabolic myopathies, neuromuscular transmission defects, neuropathies, motor neuronopathies, and also inflammatory muscle or nerve conditions. Further, I see patients with general neurological problems such seizures when I attend on the inpatient neurology services.”
Speaking of his work at Boston Children's Hospital, Dr. Darras said, “I am proud to be involved with two innovative multi-disciplinary clinical programs. I direct the Neuromuscular Program, which provides diagnostic evaluation and therapeutic services for children with neuromuscular diseases and is one largest of its kind in the country; and the Spinal Muscular Atrophy (SMA) Clinical Research Program, which seeks to improve medical care of children with SMA and discover new treatments for this devastating motor neuron disease.?In a telephone interview with Georgios Glossiotis, the father of Panagiotis-Raphael, he had only praises for Dr. Basil Darras, Hellenes in Greece and around the world, and His Eminence Archbishop Elpidophoros of America, who showed concern and expressed his support by calling the Glossiotis family. He also communicated with the Greek government and asked that little Panagiotis be helped in any way possible.
Glossiotis said, “Dr. Darras is an exceptional person and this is one of the reasons that we are coming to Boston to do the gene treatment.”
He also said, “we are completely ready to travel to Boston and I want to tell you that all this was done through the love and generosity of the people everywhere – Greece, Cyprus, and Greeks abroad – who contributed to gather the necessary funds for Panagiotis.” He added that “I consider this a miracle; I can’t interpret it in any other way. His Eminence Archbishop Elpidophoros of America called us and told us in a very friendly and encouraging way that he is going to help as much as he can.” Glossiotis said that “we are going to stay in Boston for approximately three months.”