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

Debora Pellicano

Chief Financial 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

Collin Pollock
Kaleen Robinson
Brian Snyder, MD
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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Medical Advisory Council

Bakri Elsheikh, MBBS

Chair, Professor of Neurology and Director, Neuromuscular Division, Department of Neurology, The Ohio State University Wexner Medical Center; Spinal Muscular Atrophy Outcome Measures, Biomarkers, and Clinical Trials

Jennifer Deans, MHA,MS, CCLS

Manager, Cure SMA

Kapil Arya, MD

Pediatric Neurologist, Arkansas Children's Hospital

John Brandsema, MD

Attending Physician, Neuromuscular/General Neurology & Electromyography Children's Hospital of Philadelphia

Tom Crawford, MD

Pediatric Neurology, Johns Hopkins Hospital

Stacy Dixon, MD, PhD

Associate Professor of Neurology University of Colorado

Tina Duong, MPT, PhD

Sr. Research Scientist Director, Clinical Outcomes Research & Development Division of Neuromuscular Medicine, Stanford University Co-Director, Stanford Innovative Genetic Neurologic Investigation and Treatment Evaluation Center Assistant Professor Department of Physical Medicine and Rehabilitation University of California, Davis

Jason Edinger, DO

Program Director, Pediatric Rehabilitation Medicine Fellowship Assistant Professor, Department of PM&R and Pediatrics University of Pittsburgh School of Medicine UPMC Children's Hospital of Pittsburgh

Albert Freedman, PhD

Psychology Independent Practice

Melissa Gibbons, MS, CGC

Associate Professor University of Colorado SOM Genetic Counselor Children’s Hospital Colorado

Natalie Goedeker, DNP, CPNP

Co-director, pediatric neuromuscular clinical research Washington University in St. Louis/St. Louis Children's Hospital

Melissa Gibbons, MS, CGC

Associate Professor University of Colorado SOM Genetic Counselor Children’s Hospital Colorado

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

Clinical Nutrition Director-Pediatrics, Intermountain Children’s Health in Salt Lake City, UT

Luca Labianca, MD, PhD

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

Maggie B. Martinez

Neuromuscular Program Coordinator Children’s National Hospital

Susan Matesanz, MD

Assistant Professor of Clinical Neurology Children's Hospital of Philadelphia

Leslie Nelson, PT, PhD, OCS

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

Julie A. Parsons, MD

Professor Emerita of Clinical Pediatrics and Neurology University of Colorado School of Medicine

Crystal Proud, MD

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

Pooja Mohan Rao, MD

Assistant Professor Division of Neuromuscular Neurology Department of Neurology Georgetown University Hospital Washington DC

Anne Stratton, MD

Pediatric Physiatrist, Children’s Hospital Colorado

Britton Zuccarelli, MD, FCNS

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

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, Chief Scientific Officer, 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.

Leadership

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Leadership Team

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Kenneth Hobby

Colleen McCarthy O’Toole

Jamie Gibson, CNP

Jackie Glascock, PhD

Marline Pagan, MBA

Debora Pellicano

Jesse Aynes, CFRE

Lisa Belter

Mary Curry, ND

Maynard Friesz

Shannon O'Brien

Board

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Nick Farrell

Shannon Zerzan

Brad Nunemaker

Committee Members

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Director Emeriti

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Medical Advisory Council

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Bakri Elsheikh, MBBS

Jennifer Deans, MHA,MS, CCLS

Kapil Arya, MD

John Brandsema, MD

Tom Crawford, MD

Stacy Dixon, MD, PhD

Tina Duong, MPT, PhD

Jason Edinger, DO

Albert Freedman, PhD

Melissa Gibbons, MS, CGC

Natalie Goedeker, DNP, CPNP

Melissa Gibbons, MS, CGC

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

Luca Labianca, MD, PhD

Maggie B. Martinez

Susan Matesanz, MD

Leslie Nelson, PT, PhD, OCS

Julie A. Parsons, MD

Crystal Proud, MD

Pooja Mohan Rao, MD

Anne Stratton, MD

Britton Zuccarelli, MD, FCNS

Scientific Advisory Board

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Jackie Glascock, PhD

Elliot J. Androphy, MD

Arthur H. Burghes, PhD

Tom Crawford, MD

Allison Ebert, PhD

Katherine W. Klinger PhD

Stephen J. Kolb, MD, PhD

Rashmi Kothary, PhD

Adrian Krainer, PhD

Umrao Monani, PhD

Lyndsay Murray, PhD

Samuel Pfaff, PhD

Charlotte Sumner, MD

Translational Advisory Council

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Christine Brideau, PhD

Arthur Burghes, PhD

Peter Hodder, PhD

Jim Inglese, PhD

Joseph W. Lewcock, PhD

Timothy Reilly, PhD

Lee Rubin, PhD

Jasbir Singh, PhD

Charlotte Sumner, MD

Michael Vellard, PhD

Chien-Ping Ko, PhD

Dione Kobayashi, PhD

Adults with SMA Advisory Council

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