Personnel

URMC Batten Study Group
Back row: Heather Adams, Sara Defendorf, Frederick Marshall, Alyssa Thatcher, and Paul Rothberg. Front row: Lisa DeBlieck, Jonathan Mink, Amy Vierhile, and Erika Augustine.

Heather Adams, PhD is Assistant Professor of Neurology and Pediatrics. She is a neuropsychologist and the PI of the Neurobehavioral Outcomes in Batten Disease study.

Erika F. Augustine, MD is Assistant Professor of Neurology and Pediatrics. She is Co-PI of the JUMP study.

Elisabeth de Blieck, MPA CCRC is Program Manager at the Clinical Trials Coordination Center at URMC.

Sara Defendorf, BS, CCRP is the clinical site monitor for the JUMP study.

Jennifer M. Kwon, MD is Associate Professor of Neurology and Pediatrics at URMC. She is the medical monitor for the JUMP study.

Frederick J. Marshall, MD is Associate Professor of Neurology and Director of the Memory Care Program at URMC. He is PI of the JUMP study.

Jonathan W. Mink, MD PhD is medical director of the URBC. He is Professor of Neurology and Pediatrics and Chief of the Child Neurology Division at the University of Rochester Medical Center (URMC). He is Principal Investigator (PI) of the natural history study and Co-PI of the JUMP study.

Paul G. Rothberg, PhD is Professor of Pathology and Laboratory Medicine and is Director of the Molecular Diagnosis Laboratory at URMC. He conducts genetic testing.

Alyssa Thatcher, BS is a study coordinator for the Neurobehavioral Outcomes in Batten Disease study and the natural history study.

Amy Vierhile, RN PNP is a Pediatric Nurse Practitioner in Child Neurology at URMC. She is a study coordinator for the natural history study and the JUMP study.

Current and Past Students

Current students Aimee Morris, Shayne Ragbeer, Katherine Rose, and Sarah Pearl Aronow-Werner (left to right)

  • Ankita Agarwal
  • Sarah Pearl Aronow-Werner
  • Jennifer Cialone, MD
  • Danielle DeCampo, PhD
  • Jared DeYoung, MD
  • Julie Eisengart, PhD
  • Anna Gekker, PhD
  • Rachel Jordan
  • Melissa Wang Ko, MD
  • Tiffani McDonough, MD
  • Aimee Morris
  • Denia Ramirez-Montealegre, MD, PhD
  • Shayne Ragbeer
  • Jennifer Riehl, MD
  • Katherine Rose
  • Sabrina Seehafer, PhD
  • Erika Levy Wexler, MD
  • Kimberly Worcester

Contact Us

Batten Study Group
601 Elmwood Ave
Box 631
Rochester, NY 14642
Phone: 585-275-4762
Fax: 585-275-3683
(directed to Amy Vierhile)