Cure SMA Welcomes New Board and Committee Members

Recently, Cure SMA confirmed three new board members and several new committee members. These new members will provide additional leadership in the areas of advocacy, FDA/regulation, and research. We extend a warm welcome to new board members Annie Kennedy, Spencer Perlman, and John Porter, PhD.

We also extend a warm welcome to new committee members Kelly Cole, Esq; Doug Kerr, MBA, MD, PhD; John Kissel, MD; Katherine Klinger, PhD; Edmund Lee; Catherine Martin, Esq.; Thomas Murray, PhD; Shannon Shryne; Brian Snyder, MD; Peter Statile; and Charlotte Sumner, MD.

Ms. Cole will serve on our Public Advocacy Committee. Mr. Lee, Ms. Martin, and Mr. Statile will serve on our Finance Committee, and Ms. Shryne will serve on our Programs and Development Committee. Drs. Kerr, Kissel, Klinger, Murray, Snyder and Sumner will serve on our Science and Medicine Committee.

These new appointments will support ongoing strategic work by the board and related committees. The last several years in particular have seen great progress for our community, in multiple areas. Six drugs are now in clinical trials, initiatives are underway to improve the standard of care for SMA, and we’ve been given multiple opportunities to share our community’s voice with the FDA as part of the Patient-Focused Drug Development Initiative.

The board is currently working to implement a strategic plan that will meet these challenges and opportunities, while supporting our research and care priorities. Our board and committee members will provide necessary expertise and leadership as we move closer to our goal of approved treatments for SMA.

About Our New Board Members

Annie Kennedy is the Senior Vice President, Legislation & Public Policy, for Parent Project Muscular Dystrophy. Prior to that, Annie was with the Muscular Dystrophy Association (MDA). Annie has built strong partnerships with policy makers, federal agencies, Industry, and alliances, and has worked on a variety of legislative efforts, patient registries, multidisciplinary groups, and more. Ms. Kennedy also co-led a national Burden of Disease Study in ALS, DM, DMD, and SMA.

Spencer Perlman co-leads the healthcare team at Height Securities, which he joined in October 2014 after more than 17 years working in healthcare policy in the public and private sectors in Washington, D.C. He has extensive experience analyzing federal regulatory and legislative actions affecting various areas of the healthcare sector. Prior to joining Height, Mr. Perlman worked with a number of patient advocacy groups, healthcare providers, and professional societies to develop and implement advocacy campaigns, analyze health care and Medicare policies for client leadership and management, and lead complex grant writing projects. Mr. Perlman served as Cure SMA’s representative in Washington, D.C. from 2005 – 2014.

John Porter, PhD, is the currently the Chief Science Officer of the Myotonic Dystrophy Foundation. Prior to that appointment, he served as CEO of Parent Project Muscular Dystrophy. He also served for 10 years as Program Director for neuromuscular diseases, including SMA, at the National Institutes of Health (NIH)/National Institute for Neurological Disorders and Stroke (NINDS). Dr. Porter previously was Professor of Neurology at Case Western Reserve University. His 20+ year academic research career focused upon extraocular muscle biology in health and disease, including the mechanisms responsible for its novel responses to a variety of neuromuscular disorders. He currently consults for a variety of companies and organizations working on neuromuscular diseases.

Other Leadership Changes

Susan Apkon has completed her term of service on the Medical Advisory Council. Thank you to Dr. Apkon for her hard work and dedication.

We’d like to extend a warm welcome to new Scientific Advisory Board members Stephen Kolb and Umrao Monani. Dr. Kolb is Assistant Professor: Department of Neurology and the Department of Biological Chemistry and Pharmacology, Ohio State University Wexner Medical Center. Dr, Monani is Associate Professor of Pathology and Cell Biology (in Neurology) at Columbia University.

Drs. Kolb and Monani will work with other SAB members to set priorities and make funding decisions for basic research.

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