A lifelong caretaker for others, Dr. Roy Elterman transformed the world of child neurology through his work in clinical trials of medications for epilepsy and his development of the Pediatric Epilepsy Research Foundation (PERF®).
Dr. Elterman was born in Florida and seriously considered becoming a veterinarian. He started his freshman year at the University of Florida in Gainesville, then studied chemistry at the University of Miami. However, he applied to medical school at the University of Miami and was accepted even before completing an undergraduate degree.
In medical school, he was inspired by the work of pediatric neurologist Stuart Brown. He attended the University of California – San Francisco for two years of pediatric residency, then studied child neurology at the University of Texas Health Sciences Center in San Antonio.
After a stint in the Air Force, Dr. Elterman went into private practice at Dallas Pediatric Neurology Associates, where he was a beloved clinician. His former patients describe him as enormously empathetic and vastly knowledgeable, who listens closely and ensures that things are done correctly.
While seeing patients in the clinic, Dr. Elterman was also engaged in clinical trials of pediatric medications for epilepsy, including valproate, lamotrigine, levetiracetam, and topiramate. He attended as a clinical professor of neurology at the University of Texas Southwestern Medical Center in Dallas.
In the 1990s, few medications were available in the United States for children with intractable infantile spasms. Vigabatrin was used in other countries for this indication, and some small studies showed promise. With pediatric neurologist Donald Shields, Dr. Elterman decided to make vigabatrin available for American children with infantile spasms. In 1994, they filed an Investigational New Drug Application with the Food and Drug Administration. They initiated a US trial comparing low-dose and high-dose vigabatrin and organized a national multicenter collaboration – the Vigabatrin Infantile Spasms Study Group (VISSG) – so that child neurologists all over the United States could utilize vigabatrin for patients as part of their trial.
Ovation Pharmaceuticals eventually purchased the rights for vigabatrin and sought FDA approval. They agreed to pay Dr. Elterman and Dr. Shields royalties for their data from the VISSG study. Vigabatrin finally achieved FDA approval in 2009. Dr. Elterman and Dr. Shields could have retired, very wealthy, but incredibly used their substantial royalties to create the not-for-profit Pediatric Epilepsy Research Foundation (PERF®) to support pediatric neurology research. In 2011, Dr. Elterman retired from clinical practice to take on the role of President of PERF®.
Since 2010, PERF® has provided nearly $20 million to fund more than 65 research studies, along with endowments at universities, all to expand research and education in pediatric epilepsy. PERF® provides funding for a wide variety of epilepsy early-career awards for promising child neurologists (now called the Elterman and Shields Awards); partners with the American Epilepsy Society to fund junior pediatric epileptologists; and awards grants to encourage multicenter collaborations, including the Early-Onset Epilepsy Consortium, the Neonatal Seizure Registry, and the 20-center Pediatric Epilepsy Learning Healthcare System. PERF® supports the Pellock Resident Seminar on Pediatric Epilepsy, the Pediatric Epilepsy Research Consortium, and the International Pediatric Stroke Organization.
Dr. Elterman also played a vital role in building the Child Neurology Society. As head of the Capital Acquisition Committee in its early years, he raised over one million dollars to establish the society’s endowment.
Dr. Elterman married Ragen Saphire, who taught English as a second language, in 1974. They have three children and four grandchildren, all living in the greater Los Angeles area.
PERF®’s mission statement is to “enhance the quality of life of children with epilepsy and/or other neurologic disorders.” If Dr. Elterman had only practiced exceptional clinical neurology in Dallas, he would have achieved this goal. However, his astounding work increasing the accessibility of life-changing medications for children with intractable and severe epilepsies and then establishing a foundation that will fund research, collaboration, and education in perpetuity has unquestionably changed the world of child neurology for the better.