Today the Child Neurology Foundation (CNF), named Elizabeth A. Thiele, MD, PhD, as its 2014 Infantile Spasms (IS) Heroes Award winner to help kick off IS Awareness Week (December 5-11, 2014). The IS Heroes Award was established in 2010 by CNF, www.childneurologyfoundation.org, to recognize a deserving healthcare professional for making a positive difference in the life of a child with infantile spasms.
Dr. Thiele is a pediatric neurologist/epileptologist and Director of both the Pediatric Epilepsy Program and The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex at Massachusetts General Hospital in Boston. She is also an Associate Professor in Neurology at Harvard Medical School.
Dr. Thiele was nominated for her care of an infant daughter from Vermont who began having infantile spasms a few months after being diagnosed with tuberous sclerosis complex, a rare genetic disorder that is also one leading cause of IS. In the award nomination, the mother wrote, "Dr. Thiele always takes the time to answer questions and explains things so well. You know she has your child's best interests in her heart and mind. She's so dedicated to her work, and our daughter's life would almost certainly be different if we had not found Dr. Thiele."
IS is a rare seizure disorder that occurs in young children, usually under one year of age, and is considered to be a catastrophic childhood epilepsy due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of the condition. The average age of onset is around four months, but some children may experience spasms as early as one month. A few children may begin as late as two years. Only about 2,500 children in the United States are diagnosed each year with IS.
"The development and maintenance of respectful and compassionate parent-professional partnerships are essential for our children to receive the quality care they deserve. CNF is proud to present the 2014 IS Heroes Award to Dr. Elizabeth Thiele, who is an exceptional example of this partnership in action," said W. Donald Shields, MD, CNF Board President.
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