Leadership

“Leadership is the capacity to translate vision into reality.”
–Warren Bennis

The following boards and councils provide leadership within and for key segments of our spinal muscular atrophy (SMA) community.

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Leadership Team

Operationalizes the Board’s strategic plan and delivers on the mission of the organization.

Kenneth Hobby

President

Jamie Gibson

Chief Development Officer

Marline Pagan, MBA

Chief Operating Officer

Mary Schroth, MD, FAAP, FCCP

Chief Medical Officer

Jesse Aynes

Vice President, Development and Events

Mary Curry, ND

Vice President, Clinical Research and Care

Maynard Friesz

Vice President, Policy and Advocacy

Jackie Glascock, PhD

Vice President, Research

Colleen McCarthy O’Toole

Vice President, Community Support

Amy Thomasson

Vice President, Marketing and Communications

Board

Oversees the mission of the organization, focusing on high-level strategy, oversight, and accountability.

Nick Farrell

Chair

Gillian Mullins

Secretary

Brad Nunemaker

Treasurer

Corey Braastad
Robert Graham, MD
Jaclyn Greenwood
Allyson Henkel
Kelly Jankowski

Edmund Lee
Rob Lockwood
Amy Medina
Mark Moore
Tom Murray

Spencer Perlman
Brian Snyder, MD
Peter Statile
Shannon Zerzan

Committee Members

Diana Castro, MD
Jay Chung
Bakri Elsheikh, MD
Marc Ginsky
Brianna Gross
Karen McRory-Negrin
Mark Moore
Kaleen Robinson
Joe Wiseman

Director Emeriti

Paula Barrett
Audrey Lewis
Adi Rappoport
Richard Rubenstein
Barbara Trainor
Sandy Wimsatt

Medical Advisory Council

Advises on the strategic direction of Cure SMA care programs targeted to improve healthcare quality and access to care.

Mary Schroth, MD, FAAP, FCCP

Chair, Chief Medical Officer, Cure SMA

William Bell, BS Pharm, MBA, MSCC, RPh

Director, Clinical Client Services

John Brandsema, MD

Pediatric Neuromuscular Neurology, Children’s Hospital of Philadelphia

Tom Crawford, MD

Pediatric Neurology, Johns Hopkins Hospital

Becky Hurst Davis, MS, RD, CSP, CD, CNSC

Pediatric Nutritionist, Intermountain Healthcare in Salt Lake City, UT

Tina Duong, MPT, PhDc

Physical Therapist, Stanford University

Albert Freedman, PhD

Psychology, independent practice

Melissa Gibbons, MS, CGC

Genetic Counselor, Children’s Hospital Colorado

Jennifer Hubbell, OTR/L

Occupational Therapist, Cincinnati Children’s Hospital Medical Center

Chamindra Konersman, MD

Neurologist, Rady Children’s Hospital

Richard Kravitz, MD

Pediatric Pulmonologist and Sleep Medicine Physician, University of Virginia

Kristin J. Krosschell, PT, DPT, MA, PCS

Pediatric Physical Therapist, Northwestern University

Oren Kupfer, MD

Pediatric Pulmonologist, Children’s Hospital Colorado

Khalida Liaquat, MS, LCGC

Genetic Counselor, Athena Diagnostics

Leslie Nelson, PT, PhDc, OCS

Pediatric Neuromuscular Physical Therapist, Children’s Health, University of Texas Southwestern

Julie Parsons, MD

Pediatric Neurologist, Children’s Hospital Colorado

Samuel Rosenfeld, MD

Orthopedic Surgeon, CHOC Children’s Hospital

Peter Schochet, MD

Pediatric Pulmonologist, Children’s Health, University of Texas Southwestern

Perry Shieh, MD, PhD

Neurologist, UCLA Medical Center

Anne Stratton, MD

Pediatric Physiatrist, Children’s Hospital Colorado

Stacey Tarrant, BS, RD, LDN

Nutritionist, Boston Children’s Hospital

Jane Taylor, MD, MsCR

Pediatric Pulmonologist, UPMC Children’s Hospital of Pittsburgh

Fred Troutman, PhD, RN

Nurse Educator, Professor Emeritus, Walla Walla University

Laura Watne, MS, RD, CSP

Nutritionist, Children’s Hospital Colorado

Scientific Advisory Board

Provides expert-level review and suggestions for basic research funding, abstract selection for the Cure SMA conference, and general scientific counsel.

Jackie Glascock, PhD

Chair, Vice President, Research, Cure SMA

Elliot J. Androphy, MD

Kampen-Norins Professor and Chair of the Department of Dermatology of Indiana University School of Medicine; SMA Biology

Arthur H. Burghes, PhD

Professor of Molecular and Cellular Biochemistry at the Ohio State University; SMA Biology and Animal Models

Tom Crawford, MD

Associate Professor of Neurology and Pediatrics at the Johns Hopkins School of Medicine; Child Neuromuscular Disorders

Katherine W. Klinger PhD

Translational Sciences Global Head, Sanofi S.A.

Stephen J. Kolb, MD, PhD

Associate Professor of Neurology and Biological Chemistry & Pharmacology, Ohio State Wexner Medical Center; Molecular Pathology of SMA, Biomarkers, and Clinical Trials

Adrian Krainer, PhD

Professor at the Cold Spring Harbor Laboratory; SMN splicing

Umrao Monani, PhD

Professor of Neurology (in Pathology and Cell Biology), Endowed Chair, Pediatric Neurological Sciences, Center for Motor Neuron Biology & Disease, Columbia University; SMA Biology and Animal Models

Samuel Pfaff, PhD

Investigator of the Howard Hughes Medical Institute and Professor at the Gene Expression Laboratory at the Salk Institute for Biological Studies in La Jolla, California; Motor Neuron Biologist

Charlotte Sumner, MD

Professor of Neurology and Neuroscience, Johns Hopkins School of Medicine

Translational Advisory Council

Provides expert-level review and suggestions for translational funding and general scientific/drug development counsel.

Christine Brideau, PhD

Vice President, In Vitro Biology, WuXi AppTec, Preclinical Drug Development

Arthur Burghes, PhD

Professor, The Ohio State University, SMA Biology

Peter Hodder, PhD

Executive Director of Discovery Research, Amgen Inc., Assay Development and High-Throughput Screening

Jim Inglese, PhD

Head, Laboratory of Assay Development & Screening Technology (ADST), National Center for Advancing Translational Sciences, Assay Development and High-Throughput Screening

Joseph W. Lewcock, PhD

Head of Biology Discovery, Denali Therapeutics, Preclinical Drug Development

Timothy Reilly, PhD

DABT, Director, Bristol Myers Squibb, Toxicology

Lee Rubin, PhD

Director of Translational Medicine, Harvard Stem Cell Institute, Neuronal Assay Development and High-Throughput Screening

Jasbir Singh, PhD

President, Jasin Discovery Solutions, Medicinal Chemist

Charlotte Sumner, MD

Associate Professor, Johns Hopkins University, SMA Biology/Neurology

Michael Vellard, PhD

Vice President of Research, Ultragenyx Pharmaceutical, Preclinical Drug Development

Chien-Ping Ko, PhD

Professor, University of Southern California, SMA Biology/Neurobiology

Dione Kobayashi, PhD

Executive Scientist and Rare Disease Drug Developer, Myonexus Therapeutics, Inc., Preclinical Drug Development

Adults with SMA Advisory Council

Provides high-level guidance, advice, and feedback on Cure SMA programs, initiatives, and objectives related to serving and advocating with and for adults with SMA.

Carolyn Barrett
Stephen Bingman
Amber Bosselman
Kyle Derkowski
Jose Flores

Jaclyn Greenwood
Angie Lee
Emma Lockwood
Ryan Manriquez
Doug McCullough

Dan McHale
Brad Nunemaker
Peter Pingerelli
Collin Pollock
Brian Ronningen

Kevin Schaefer
Sandy Spoonemore
Steven Verdile
Lyza Weisman
Allie Williams

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