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
Colleen McCarthy O’Toole
Jamie Gibson, CNP
Marline Pagan, MBA
Mary Schroth, MD, FAAP, FCCP
Chris Almberg
Jesse Aynes
Lisa Belter
Mary Curry, ND
Maynard Friesz
Shannon O'Brien
Jackie Glascock, PhD
Board
Oversees the mission of the organization, focusing on high-level strategy, oversight, and accountability.
Nick Farrell
Shannon Zerzan
Brad Nunemaker
Corey Braastad
Diana Castro, MD
Bakri Elsheikh, MD
Robert Graham, MD
Jaclyn Greenwood
Brianna Gross
Allyson Henkel
Kelly Jankowski
Edmund Lee
Rob Lockwood
Amy Medina
Gillian Mullins
Karen McRory-Negrin
Spencer Perlman
Kaleen Robinson
Brian Snyder, MD
Peter Statile
Committee Members
Jay Chung
Tyler Dukes
Marc Ginsky
Mark Moore
Collin Pollock
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.
Standards of Care Committee
John Brandsema, MD
Kapil Arya, MD
Albert Freedman, PhD
Richard Kravitz, MD
Chamindra Laverty, MD
Anne Stratton, MD
Conference Committee
Julie Parsons, MD
Tom Crawford, MD
Tina Duong, MPT, PhDc
Khalida Liaquat, MS, LCGC
Samuel Rosenfeld, MD
Fred Troutman, PhD, RN
Education Committee
Leslie Nelson, PT, PhDc, OCS
Becky Hurst Davis, MS, RD, CSP, CD, CNSC
Melissa Gibbons, MS, CGC
Jennifer Hubbell, OTR/L
Peter Schochet, MD
Perry Shieh, MD, PhD
Jane Taylor, MD, MsCR
CCN Registry Committee
Oren Kupfer, MD
Russell Butterfield, MD PhD
Emma Ciafaloni, MD
Natalie Goedeker, CPNP
Kristin J. Krosschell, PT, DPT, MA, PCS
Jacqueline Montes, PT, EdD, NCS
Seth Perlman, MD
Stacey Tarrant, BS, RD, LDN
CCN Center Committee
Gyula Acsadi, MD
Saunder Bernes, MD
Diana Bharucha-Goebel, MD
Lauren Camarda, MD
Shelley Coskery, RN, MSN, CRNP-AC
Basil Darras, MD
Sarah Heintzman, APRN-CNP, FNP-C, CCRC
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
Elliot J. Androphy, MD
Arthur H. Burghes, PhD
Tom Crawford, MD
Katherine W. Klinger PhD
Stephen J. Kolb, MD, PhD
Rashmi Kothary, PhD
Adrian Krainer, PhD
Umrao Monani, PhD
Lyndsay Murray, PhD
Charlotte Sumner, MD
Samuel Pfaff, PhD
Translational Advisory Council
Provides expert-level review and suggestions for translational funding and general scientific/drug development counsel.
Christine Brideau, PhD
Arthur Burghes, PhD
Peter Hodder, PhD
Jim Inglese, PhD
Joseph W. Lewcock, PhD
Timothy Reilly, PhD
Jasbir Singh, PhD
Charlotte Sumner, MD
Michael Vellard, PhD
Chien-Ping Ko, PhD
Dione Kobayashi, PhD
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