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Vicky H Whittemore

Neuroscientist and NIH program director for epilepsy and ME/CFS research who spent over two decades working for patient organisations, including the Tuberous Sclerosis Alliance

Program Director, Channels, Synapses and Circuits Cluster, Division of Neuroscience, NINDS (since 2011) · ME/CFS research portfolio, NIH (since 2013) · nonprofit leadership, Tuberous Sclerosis Alliance, Genetic Alliance, CURE Epilepsy and NCHPEG (23 years) · faculty, The Miami Project to Cure Paralysis, University of Miami School of Medicine · postdoc, University of California, Irvine, and Fogarty Fellow, Karolinska Institute · PhD in anatomy, University of Minnesota Medical School

Channels, Synapses and Circuits Cluster, Division of Neuroscience, National Institute of Neurological Disorders and Stroke, National Institutes of Health (Bethesda, Maryland, USA) ↗

Vicky H Whittemore Portrait: National Institute of Neurological Disorders and Stroke (NIH)

Tuberous sclerosis complex (TSC) is a genetic disease in which mTOR is stuck on, so benign tumours grow in the brain, kidneys and other organs. Vicky Whittemore is a co-author of EXIST-1 (FRA2013), the phase 3 randomised trial of everolimus, a drug that blocks mTORC1, in 117 people with TSC-related brain tumours called subependymal giant cell astrocytomas. The tumours shrank by at least half in 35 percent of patients on everolimus and in none on placebo. The trial helped make everolimus a standard treatment for these tumours, and it is some of the cleanest evidence in people that blocking mTOR helps when a genetic fault drives it.

Whittemore trained as a neuroscientist: a PhD in anatomy at the University of Minnesota Medical School, postdoctoral work at the University of California, Irvine, and a Fogarty Fellowship at the Karolinska Institute in Stockholm, followed by a faculty position at the Miami Project to Cure Paralysis at the University of Miami. After her nephew was diagnosed with TSC she moved to patient-led research organisations and spent 23 years in that world, including at the Tuberous Sclerosis Alliance, the Genetic Alliance and CURE Epilepsy.

In August 2011 Whittemore joined the National Institute of Neurological Disorders and Stroke as a program director. She oversees grants on the basic mechanisms and genetic causes of epilepsy, including sudden unexpected death in epilepsy, and has also overseen the NIH research portfolio on ME/CFS since 2013.

Milestones in the Atlas

A selection, not a full bibliography: only papers that meet the Atlas inclusion criteria.

YearEvidenceStudy
2013 H Efficacy and safety of everolimus for subependymal giant cell astrocytomas associated with tuberous sclerosis complex (EXIST-1): a multicentre, randomised, placebo-controlled phase 3 trial FRA2013 Co-author of EXIST-1, the phase 3 trial in which everolimus shrank TSC-related brain tumours in 35 percent of patients versus none on placebo.

Co-authors in the Atlas 6

People with a profile here who share at least one study with Vicky H Whittemore.

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  • David Lebwohl Medical oncologist and drug developer who led the clinical development of everolimus (Afinitor) at Novartis through approvals in several cancers and tuberous sclerosis, and later served as Chief Medical Officer of the gene-editing company Intellia Therapeutics
  • David N. Franz Led the EXIST-1 trial showing that the mTOR inhibitor everolimus shrinks the brain tumours (SEGAs) of tuberous sclerosis, and helped run the first sirolimus trial for its kidney tumours
  • Elena Belousova Child neurologist and epilepsy specialist in Moscow who heads a department of psychoneurology and epileptology and has been a principal investigator in international drug trials for tuberous sclerosis complex
  • Michael D. Frost Co-investigator on the EXIST-1 and EXIST-2 trials showing that the mTOR inhibitor everolimus shrinks tuberous sclerosis tumours in the brain and kidney
  • Sergiusz Jóźwiak A child neurologist known for work on tuberous sclerosis complex and a senior author of the EXIST-1 trial of everolimus.
  • Tarek Sahmoud Physician and epidemiologist who worked as a clinical program head in Novartis oncology drug development during the everolimus trials, and later as chief medical officer at several cancer drug companies

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