John Oldenhof recaps the Epilepsy Foundation research roundtable

RESEARCH ROUNDTABLE FOR EPILEPSY: A REFLECTION BY DR. JOHN OLDENHOF

At the end of May, I had the pleasure of being invited to present at the Research Roundtable for Epilepsy (RRE) and discuss my experience as a parent with a child with a Developmental Epileptic Encephalopathy (DEE) from the perspective of a clinical research scientist.

This meeting is organized by the Epilepsy Foundation. This meeting, now in its seventh year, brings together regulators (FDA, EMA, Health Canada), clinicians, academic researchers, epilepsy advocacy groups and pharmaceutical companies. This meeting has been very effective in discussing current relevant issues in epilepsy and gaining a consensus across the various organizations. This year there was a focus on DEEs.

At the meeting I spoke about my son Lukas who is 12 and has been diagnosed with the STXBP1 disorder (stxbp1disorders.org), a condition that results in the impaired merging of synaptic vesicles with the plasma membrane and consequent reduction in neurotransmitter release. It was an honor to be there as a parent representing the STXBP1 community and Developmental Epileptic Encephalopathies (DDE) in general. 

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