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.

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Kenneth Hobby

President

Colleen McCarthy O’Toole

Senior Vice President, Community Support

Jamie Gibson, CNP

Chief Development Officer

Jackie Glascock, PhD

Chief Scientific Officer

Marline Pagan, MBA

Chief Operating Officer

Mary Schroth, MD, FAAP, FCCP

Chief Medical Officer

Jesse Aynes, CFRE

Vice President, Development and Marketing

Lisa Belter

Vice President, Research Data Analytics

Mary Curry, ND

Vice President, Clinical Research and Care

Maynard Friesz

Vice President, Policy and Advocacy

Shannon O'Brien

Vice President, Community Support

Board

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

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Nick Farrell

Chair

Shannon Zerzan

Secretary

Brad Nunemaker

Vice Chair

Corey Braastad
Rachael Brown
Tyler Dukes
Sarah Shira Emmons
Marc Ginsky
Robert Graham, MD
Jaclyn Greenwood

Brianna Gross
Allyson Henkel
Kelly Jankowski
Amy Medina
Mark Moore
Karen McRory-Negrin
Spencer Perlman

Collin Pollock
Kaleen Robinson
Brian Snyder, MD
Peter Statile
Heather Vital
John Weber
Joe Wiseman

Committee Members

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Director Emeriti

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Medical Advisory Council

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

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Standards of Care Committee

John Brandsema, MD

Standards of Care Committee Chair, Pediatric Neuromuscular Neurology, Children’s Hospital of Philadelphia

Kapil Arya, MD

Pediatric Neurologist, Arkansas Children's Hospital

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

Pediatric Nutritionist, Intermountain Healthcare in Salt Lake City, UT

Albert Freedman, PhD

Psychology, independent practice

Richard Kravitz, MD

Pediatric Pulmonologist and Sleep Medicine Physician, University of Virginia

Chamindra Laverty, MD

Neurologist, Rady Children’s Hospital

Anne Stratton, MD

Pediatric Physiatrist, Children’s Hospital Colorado

Conference Committee

Julie Parsons, MD

Conference Committee Chair, Pediatric Neurologist, Children’s Hospital Colorado

Tom Crawford, MD

Pediatric Neurology, Johns Hopkins Hospital

Tina Duong, MPT, PhD

Physical Therapist, Stanford University

Jason Edinger, DO

Pediatric Rehabilitation Medicine, UPMC Children's Hospital of Pittsburgh

Doreen Ho, MD

Physician Investigator, Massachusetts General Hospital

Luca Labianca, MD, PhD

Pediatric's Orthopedics Surgeon, Sant'Andrea University Hospital, Rome, Italy

Khalida Liaquat, MS, LCGC

Genetic Counselor, Athena Diagnostics

Crystal Proud, MD

Pediatric Neurologist, Children's Hospital of the King's Daughters

Education Committee

Leslie Nelson, PT, PhD, OCS

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

Melissa Gibbons, MS, CGC

Genetic Counselor, Children’s Hospital Colorado

Jennifer Hubbell, OTR/L

Occupational Therapist, Cincinnati Children’s Hospital Medical Center

Margaret Martinez

Neuromuscular Program & Study Coordinator, Children's National Hospital

Susan Matesanz, MD

Assistant Professor of Clinical Neurology, Children's Hospital of Philadelphia

Pooja Mohan Rao, MD

Neurologist, Georgetown University Hospital

Peter Schochet, MD

Pediatric Pulmonologist, Children’s Health and Texas Scottish Rite Hospital

Perry Shieh, MD, PhD

Neurologist, UCLA Medical Center

Britton Zuccarelli, MD

Clinical Associate Professor of Pediatrics, University of Kansas School of Medicine

CCN Registry Committee

Oren Kupfer, MD

CCN Registry Committee Chair, Pediatric Pulmonologist, Children's Hospital Colorado

Russell Butterfield, MD PhD

Pediatric Neurologist, University of Utah

Emma Ciafaloni, MD

Pediatric Neurologist, University of Rochester Medical Center

Natalie Goedeker, CPNP

Neurology Nurse Practitioner, Neurology, Washington University/St. Louis Children's Hospital

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

Pediatric Physical Therapist, Northwestern University

Jacqueline Montes, PT, EdD, NCS

Physical Therapist, Columbia University

Seth Perlman, MD

Pediatric Neurologist, Neuromuscular Program, Seattle Children's Hospital

Stacey Tarrant, BS, RD, LDN

Nutritionist, Boston Children’s Hospital

CCN Center Committee

Gyula Acsadi, MD

CCN Center Committee Chair, Pediatric Neurologist, Connecticut Children's Medical Center

Saunder Bernes, MD

Pediatric Neurologist, Phoenix Children's Hospital

Diana Bharucha-Goebel, MD

Pediatric Neurologist, Children's National Medical Center

Lauren Camarda, MD

Pediatric Pulmonologist, Advocate Children's Hospital

Shelley Coskery, RN, MSN, CRNP-AC

Pediatric Pulmonary Nurse Practitioner, University of Alabama at Brimingham

Basil Darras, MD

Neurologist, Boston Children's Hospital

Sarah Heintzman, APRN-CNP, FNP-C, CCRC

Neurology Nurse Practitioner, The Ohio State University Wexner Medical Center

Scientific Advisory Board

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

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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

Allison Ebert, PhD

Associate Professor of the Department of Cell Biology, Neurobiology and Anatomy Medical College of Wisconsin; SMA Biology and Disease Modeling

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

Rashmi Kothary, PhD

Professor, Department of Cellular and Molecular Medicine at the University of Ottawa. Deputy Scientific Director, Ottawa Hospital Research Institute

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

Lyndsay Murray, PhD

Senior Lecturer in Anatomy, Centre for Discovery Brain Sciences, University of Edinburgh in Edinburgh, UK; SMA and Motor Neuron Biology

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.

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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.

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Allie Williams
Amber Bosselman
Andrew Cherico
Bella Barrientes
Brian Ronningen

Dan McHale
Felipe Gutierrez
Jaclyn Greenwood
Janelle Fiesta
Jose Flores

Kassie Manchester
Keishla Rolon
Kyle Derkowski
LaMondre Pough
Laura Watson

Mike Armitage
Ryan Manriquez
Stephen Bingman
Viola Dwyer

In memoriam, we honor Sandy Spoonemore for her service to the Adult Advisory Council.