Company

RogCon founders from left to right: Kelley Dalby, Dr. Steven Petrou and Alex Nemiroff.

RogCon is a biotechnology company focused on discovering and developing novel therapeutics for children suffering from SCN2A mutations, where no solutions currently exist. The Company was founded by two parents of children affected by SCN2A mutations, Alex Nemiroff and Kelley Dalby, and Dr. Steven Petrou, a renowned neuroscientist specializing in genetic epilepsy.

Underwhelmed at the current standard of care and grim prognosis, the Founders set out to amass the world’s leading experts in epilepsy research and drug development to support and advance the Company’s efforts to identify new disease-modifying ways to treat SCN2A disease. This led to partnerships with key industry and academic institutions, including a collaboration with Ionis Pharmaceuticals, Inc. [Nasdaq: IONS] to harness their expertise in antisense oligonucleotide drug discovery.

Today, the RogCon team consists of dedicated scientists, researchers and professionals, all guided by the singular goal of changing the lives of children and families impacted by mutations in SCN2A.

Lead Partners

In 2016, Ionis Pharmaceuticals (“Ionis”) [NASDAQ: IONS] and RogCon began a collaboration with the goal of developing new disease-modifying antisense oligonucleotide drugs to treat SCN2A disorders.

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Ionis is the leading company in RNA-targeted drug discovery and development with a pipeline of first-in-class or best-in-class medicines with the potential to provide high value for patients with significant unmet medical needs. Over the last 30 years, Ionis has created an efficient and broadly applicable drug discovery platform using its proprietary antisense technology.

Ionis has created a large pipeline of first-in-class or best-in-class drugs, with over forty drugs in development. Including SPINRAZA® (nusinersen), an approved treatment for patients with spinal muscular atrophy, or SMA, a severe motor-neuron disease that is the leading genetic cause of infant mortality. Ionis is well-suited as a partner for RogCon given their leading position in antisense technology and proven success in rare, genetic disorders and neurological disease.

Our co-founder, Dr. Steven Petrou, leads The Florey Institute of Neuroscience and Mental Health, one of the largest and most highly respected brain research centers in the world.

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The research collaboration between The Florey and RogCon is critical to ensure RogCon is at the forefront of scientific and medical knowledge on SCN2A mutations. A large group of scientists at the Ion Channels and Human Diseases Laboratory at the Florey Institute have played a pivotal role in RogCon’s work to research and understand SCN2A mutations through a multidisciplinary approach including ion channel biophysics, mouse transgenesis, genetic analysis, computational modeling and in vitro and in vivo electrophysiology.

Advisors

  • Dr. Ingrid Scheffer, AO, MBBS, Ph.D, FRACP, FAA, FRS

    Florey Institute of Neuroscience and Mental Health, University of Melbourne, Professor of Neurology

  • Dr. Rikke Møller

    Head of the Epilepsy Genetics and Personalized Medicine Unit at the Danish Epilepsy Center, Filadelfia

  • Dr. Katherine Howell, MBBS (Hon), Ph.D, FRACP

    Neurologist at Royal Children’s Hospital, Murdoch Children’s Research Institute, University of Melbourne

  • Dr. Annapurna Poduri, M.D., MPH

    Director, Epilepsy Genetics, Boston Children’s Hospital Professors of Neurology, Harvard University Medical School

  • Dr. Heather Olson, M.D.

    Assistant in Neurology, Boston Children’s Hospital Instructor of Neurology, Harvard Medical School

  • Dr. Maria Roberta Cilio, M.D., Ph. D

    Director of Research, University of California San Francisco Epilepsy Center Professor of Neurology, UCSF Medical School

  • Dr. Theodore Cummins, Ph.D

    Chair of Biology, Stark Neurosciences Institute, Indiana University

  • Dr. Holger Lerche

    Neurologist, Hertie Institute for Clinical Brain Research University Children’s Hospital, Tubingen, Germany

  • Dr. Sam Berkovic, AC, FAA FRACP, FRS

    Neurologist, University of Melbourne Department of Medicine Director of the Epilepsy Research Center at Austin Health

  • Dr. Markus Wolff

    Neurologist at University  Children’s Hospital Tubingen, Department of Neuropediatrics, Developmental Neurology, Social Pediatrics

Collaborators

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Roger-RogCon

Roger

We were always told that the moment you see your child for the first time is surreal, a day you will always remember. That first day is forever ingrained in my and my wife’s minds, but for a different reason. Our delivery, like the pregnancy, was a breeze, and we were staring in awe at our first child Roger in the early hours of the morning on February 1, 2014. After nursing and spending a few minutes alone with me and my wife, Roger was taken away for a routine check and we had a moment to ourselves, giddy at the prospect of being first time parents and embarking on this new chapter of life.”

connor

Connor

Connor was born and labeled healthy, and we were sent home from the hospital. We were so excited that we were able to give our older son Chase a brother and a best friend for life. But it was short-lived. A few weeks after birth, he cried often, rarely slept and had a lot of gastrointestinal issues and feeding difficulties. At this point I naively thought that when a person was ill, he went to the doctor, received a diagnosis, took a medication and got better. I thought diseases were cured and people recovered. I was in for the shock of my life having Connor as my son.

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