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Who's Who at MGFA?

Executive Committee

Sam Schulhof, Chair

Sam is a member and past Chairperson of the Board of Managers of AMT Machine Systems, LLC. He is co-founder and Chairperson of the Board of Phoenix Fuel System, Inc. He has held executive and senior management positions with the General Electric Company and the University of Pittsburgh. In addition, he has held senior level political appointments with the U.S. Environmental Protection Agency., the Action Agency, the U.S. Department of Health, Education and Welfare, and served as deputy special assistant to two Presidents of the United States. Sam is the Chair of MGFA.

Steve Hawco, Vice Chair

Steve Hawco joined the board in June 2008 with over 20 years of experience in marketing, merchandising and operations and more than 12 years of experience in e-Commerce. He holds an MBA in Finance and a Bachelor of Science degree in Chemistry from the University of Connecticut. Currently, Steve is the Senior Vice President of e-Commerce and Publications for Wyndham Worldwide – Exchange and Rental. Prior to his role at Wyndham, he spent 19 years with LEGO Group, where he helped make the direct-to-consumer Web site and catalog the most profitable channel within the organization. Steve also served as marketing manager for Condensed Books and Series with the Readers Digest Association. Outside of his role at Group RCI, Steve serves on the Board of Directors at eBillme, the leading provider of payment solutions that extend online banking to a merchant’s account. Steve is the MGFA Vice Chair and acting Treasurer. He also serves as the chair of the Finance and the Web Redesign Committees. He is also a member of the Executive and Resource Development Committees.

Janet A. Myder, Secretary

Since her retirement as a public policy analyst and advocate for the elderly, Janet has been an advocate for persons such as herself who have myasthenia gravis. She focused her Washington, DC based career on health care through physical therapy practice and health policy analysis, where she specialized in federal legislation and regulations that define Medicare benefits and promote nursing home quality. Janet joined the MGFA national board in 2007. She is the MGFA Secretary, Communications Committee chair and a member of the Executive and Chapter Relations Committees. For several years she served on the MGFA MD/DC/DE chapter board of directors and co-chaired the Bethesda, Maryland MG patient support group. Janet holds a Bachelor of Science degree in physical therapy from the University of Connecticut and a Master of Public Administration degree from American University.

Marie Ronnlof, Chapter Liaison

In 1995 Marie founded the West Central Florida Chapter of MGFA and has since merged the East Central Florida and South Florida Gold Coast Chapters into what is now known as Greater Florida Chapter where she currently serves as President. A former certified legal assistant, Marie has also been active in local school associations, where she served as President of the local PTA, church training programs, and was active in the development of and implementation of programs for the certification of legal assistants. Marie presently serves on her church Finance Council, as well as co-chair of major campaigns to substantially increase the number of volunteers for various church programs, donations for church operations, and a building campaign which was successful in raising $2.5 million. She is the member elected Chapter Liaison to the Board and the Chair of Chapter Relations Committee. Marie is a member the Executive and the Audit/Risk Management and the Chairperson of the Bylaws/Policies and Procedures Committees.

Marcia Lorimer, RN, MSN, CPNP

Marcia is Director of the Pediatric Nurse Practitioner Specialty at Duke University School of Nursing, Durham, NC. She was diagnosed with MG at age 10. Marcia was elected to the Board in 2006 after serving as Nurses Advisory Board (NAB) Immediate Past Chair. Prior to her service as NAB representative, she served on the Board from 1991–2002 in several capacities, on several committees, and as Chairperson. She continues to be an active member of the Carolinas Chapter. Marcia chairs the Audit/Risk Management and also serves on the Bylaws/Policies and Procedures Committee, and Executive Committee.

Arthur Phillips Sultan

Arthur is a Financial Systems and Accounting Manager with 45 years of experience in both the for-profit and non-profit sectors. Arthur has worked for such diverse organizations as Citibank, Xerox, Yale University and Pepsi Cola. He held a variety of senior management positions such as: Chief Financial and Information Officer and Controllerships both domestically and internationally. His non-profit experience includes Board Member and Finance Chair for Fraunces Tavern Museum and the New Canaan Nature Center. In addition he has served as board Member and Budget Chairman for the New Canaan Board of Education. Arthur earned his B.A. from the University of Bridgeport and MBA from Hofstra University in Finance and Management where he earned the distinction of being number 1 in his class. Arthur suffers from Post Polio Syndrome, a degenerative nerve disorder. Arthur co-chairs the Audit/Risk Management Committee and serves on Executive, Board Development/Nominating and Resource Development Committees.

Edward Walsh, Treasurer

Ed is a senior executive with 30 plus years of international financial and operating experience in Corporate and Consumer financial services. Since retiring from Citibank/Citicorp where he was Executive Vice-President (EVP), Chief Administrative Officer, Consumer Lending he has gotten involved with several startup ventures as both a board member and investor. As EVP he was responsible for all asset product offerings other than credit cards for Citibank/Citigroup and accountable for the management of $222B in assets. Ed earned a B.S. in Finance and Accounting from Fordham University (1975) and is a CPA. Ed serves on the Executive and the Finance Committees.

Board of Directors

Judy Bodner

Judy is a Senior Marketing Executive who delivers new customer-centric business strategies to achieve rapid results. An expert in both database marketing and transformation management, she most recently served as Director of Contact Management for Citibank’s Cards organization, where she led delivery of Internet and offline communication and channel strategies resulting in triple-digit increases in product sales, and significantly reduced marketing expenses. Her previous roles at Citi span product development and marketplace launch, technology-based process redesign, customer acquisitions and lifecycle management, direct and interactive marketing, sales strategy, client management and consulting. Judy holds an MBA in Finance from New York University, Stern School of Business. She serves on the Communications and Resource Development Committees and two specialized Committees– Outreach/Programs and Web Redesign.

Jennifer Faucett

Jennifer is an associate attorney in the employee benefits and executive compensation practice of the law firm of Bryan Cave LLP, in Atlanta, GA. She holds a B.A in Political Science from Furman University (2001) and a J.D., Magna Cum Laude, from the University of Alabama School of Law (2005). Jennifer has MG and is currently involved in building a local support group for MG patients and their caregivers. She is a member of the Georgia chapter of MGFA and also serves on its board of directors. Jennifer serves on the Communication and Chapter Relations Committees and the two new special Committees – Outreach/Programs and Web Redesign.

Henry Kaminski, MD, Chair, Medical/Scientific Advisory Board

Henry Kaminski, M.D., is chairman of the Department of Neurology & Psychiatry at Saint Louis University. He is a nationally recognized expert in care of patients with myasthenia gravis and serves as Chair of the Medical/Scientific Advisory Board. His research program, which has received continuous sponsorship by the National Institutes of Health since 1993, is centered on the understanding of the biology of extra ocular muscle and the pathogenesis of myasthenia gravis. He is currently working to develop complement inhibitor-based treatment of myasthenia gravis and muscular dystrophy. He is a member of the Executive Committee of a NIH-sponsored trial to evaluate the role of thymectomy in management of patients with myasthenia gravis and principal investigator of ancillary study, Biomarkers in Myasthenia Gravis.

Susan Klinger

Susan is a retired Senior Vice President of Human Resources. She spent 29 years of her 35 year career in HR at Citigroup in various Human Resource roles across the corporation. Her expertise lies in problem solving, performance management, communications and recruitment. She also has particular interest in employee advocacy which has easily translated into patient advocacy. Shortly after she was diagnosed with MG in 2004 she became involved with the NY Metro Chapter of MGFA, joining its board of directors in 2005. Susan has volunteered with the Medicare Rights Center as a Health Advocate and also served as a board member and HR chair for Human Development Services of Westchester, an organization which provides multi-discipline programs such as case management, supported housing and HUD services for those recovering from mental health issues. Sue earned a BA in Sociology from Brooklyn College and attended Baruch College of Business Management. She chairs the Board Development/Nominating Committee and serves on the Resource Development Committee.

Wilma Koopman, RN, WScN Chair, Nurses Advisory Board

Wilma is a nurse practitioner in an acute care London, Ontario hospital providing medical services to both hospitalized and ambulatory care individuals and families with neuromuscular diseases, since 1981. A Myasthenia Gravis Clinic has been established and patients are assessed on a regular basis. Wilma has collaborated on multiple research studies in MG including swallowing problems, fatigue and sleep apnea. She has authored many articles on neuroscience nursing including MS, GBS, and MG. She is co-author of the nursing chapter of the MGFA Health Professionals manual. Wilma lectures extensively on neuromuscular diseases locally, nationally and internationally. Her affiliations include Canadian, American and world associations/federations of neuroscience nursing (CANN, AANN, and WFNN). Certification in Neuroscience Nursing and as an Adult Nurse Practitioner (RN/EC) have been awarded. She is also an assistant professor in Health Sciences Faculty at the University of Western Ontario, Canada. As an advocate for patients and families with neuromuscular diseases and particularly MG, she is the current chair of the MGFA’s Nurses Advisory Board. She also serves on the Board Development/Nominating Committee and the special Committee of Outreach/Programs.

Nancy Kuntz, MD

Nancy is Medical Director of the Mazza Foundation Neuromuscular Disorders Program at Children’s Memorial Hospital in Chicago. Nancy’s specialty is Pediatrics and Child Neurology. She received her B.A from Boston College (1972), M.D. from Boston University School of Medicine (1975), Graduate medical education in Pediatrics at John Hopkins Hospital (1975-1977) and Child Neurology (1977-1980) and Clinical EMG (1982) at the Mayo Graduate School of Medicine. Nancy serves on the Communication Committee and the Outreach/Programs special Committee.

Nancy Law

Nancy Law is the Executive Vice President of programs and services with the MS Society. Nancy has been employed by the Society since 1986, including 4.5 years as program director in the Ohio Buckeye chapter. In her 24 years with the MS Society, Nancy has authored a number of articles, manuals, and training programs. Since her appointment as Vice President in 1997, Nancy has led the Society’s efforts to achieve high quality programs for people with MS and their families nationwide. She has raised more than 16 million dollars in grants and underwriting for NMSS programs and services. Nancy has spoken at numerous national and international conferences. She has achieved recent recognition for expertise in issues affecting child caregivers, and served as advisor on a study conducted by the National Alliance for Care giving. She has been quoted in articles the Wall Street Journal and USA Today on this subject. Nancy graduated with a degree in speech/communications from Ohio Wesleyan University, and received her social work license in Ohio in 1986. Before joining the Society she had work experience in child welfare, foster home certification and supervision, and volunteer management. Nancy serves on the Resource Development Chapter Relations Committees.

Steve Merusi

Steve is currently Vice President, Application Development & Support, Group RCI Wyndham Worldwide and President of Merusi Management Consulting, L.L.C. Steve has worked in traditional and consulting organizations, where he helped transform businesses by providing technology solutions for business problems. Steve has over 20 years of development and management experience with expertise in process engineering, software architecture and development. Steve completed the Leadership and Management Program at the Massachusetts Institute of Technology, Sloan School of Management (2008) and received his Diploma in Computer Science from the Chubb Institute in 1995. Steve serves on the Communication Committee and the two new special Committees – Outreach/Programs and Web Redesign.

Jeffrey Pilgrim

Jeff is a founding partner in the law firm of Grady Pilgrim Christakis Bell LLP, in Chicago. He is a graduate of the University of Iowa (1993) with a B.A. in Business Administration and Finance. He earned his J.D with High Honors in 1999 from the Chicago-Kent College of Law, Illinois Institute of Technology. Jeff has MG and has organized successful fundraising events for the MG research Program at the University of Illinois at Chicago. Jeff serves on the Bylaws/Policies & Procedures and Resource Development Committees.

Robert Ruff, MD, Ph.D.

Dr. Ruff is chief of neurology at the Cleveland VA Medical Center. He is a neurologist and biophysicist. He is professor of Neurology and Neurosciences at Case Western Reserve University School of Medicine and acting Director of Rehabilitation Research and Development Science for the Department of Veteran’s Affairs. Dr. Ruff has been involved in MG research and treatment for more than 30 years and continues to serve as a medical advisor to the Ohio State Chapter. Dr. Ruff serves as a member of the Communications Committee.

Zaeem A. Siddiqi, MD, PhD.

Zaeem A. Siddiqi is an Associate Professor, Division of Neurology at the University of Alberta Hospitals as well as a Visiting Neurologist at Queens Elizabeth II Hospital, Alberta. He holds a Ph.D. in Neuroscience from Boston University School of Medicine. Zaeem’s post graduate work/training include Chief Resident Neurology, Duke University and Fellowship in Neurophysiology also at Duke.

Zaeem is a member of MGFA’s Medical/Scientific Advisory Board, author of several papers, a lecturer and is currently working on a new clinical trial of CellCept in myasthenia gravis. He also serves on the Communication Committee.

Jurgen Venitz, MD

Jurgen is an Associate Professor of Pharmaceutics, School of Pharmacy, Medical College of Virginia at Richmond. He is a clinical pharmacologist, involved in drug research and teaching. His expertise in drug development and translational sciences has led to appointments on FDA Advisory Committees and NIH review panels. Jurgen was diagnosed with refractory MG in 2005 and has been a member of the Virginia/West Virginia Chapter for the last 4 years. Jurgen received his M.D. from the Universitat des Saarlandes, West Germany (1981) and his Ph.D. in 1986. Jurgen serves on the Communication Committee.

Gil Wolfe, MD, FAAN

Gil I. Wolfe, MD, is a Professor of Neurology at University of Texas Southwestern Medical School in Dallas, Texas. In September 2004, he was named to the Dr. Bob and Jean Smith Foundation Distinguished Chair in Neuromuscular Disease Research. He serves as Co-Director of the Muscular Dystrophy Association Clinics and Director of the Peripheral Neuropathy Clinic at UT Southwestern. He is also the Medical Director and acting Vice Chair for the department.

Dr. Wolfe completed his undergraduate studies at Princeton University and attended medical school at UT Southwestern. He completed an internal medicine internship and trained as a neurology resident and neuromuscular/electromyography fellow at the University of Pennsylvania Medical Center in Philadelphia. He is certified by the American Board of Psychiatry and Neurology in neurology, neuromuscular medicine, and in clinical neurophysiology.

Dr. Wolfe's main research interests include idiopathic and immune-mediated peripheral neuropathies and myasthenia gravis. He also directs autonomic testing for the Department of Neurology at UT Southwestern. He has authored or co-authored over 75 papers and 15 chapters on neuromuscular disorders. His research has been sponsored by the National Institute of Health/NINDS, Muscular Dystrophy Association, Myasthenia Gravis Foundation of America, and Food and Drug Administration. He is actively involved in the training of younger physicians. He is director of the neuromuscular medicine fellowship program and has directed the clinical neurophysiology fellowship and neurology residency programs at UT Southwestern. He has received the Trephined Cranium Award for excellence in residency teaching on several occasions. He also serves on the medical advisory boards for the Myasthenia Gravis Foundation of America, Charcot-Marie-Tooth Association, and Neuropathy Association, and has been elected to Fellow of the American Academy of Neurology and to membership in the American Neurological Association.

Charlene Hafer- Macko, MD

Charlene is a clinician and researcher affiliated with the University of Maryland School of Medicine, Department of Neurology and the Baltimore Veterans Administration Medical Center.

She holds a BA in Chemistry from the University of Pennsylvania, a MS in Biomedical Engineering from Case Western University and a M.D. from Ohio State University, School of Medicine.

Her research interest focuses on disability-adjusted exercise programs to promote health and wellness for individuals with myasthenia gravis (MG). This research identifies the factors that contribute to the fatigue of chronic, stable MG. It explores whether a multi-modal (pulmonary, aerobic, and resistive / dynamic balance) exercise program and a focused MG education program are safe and effective to improve fitness, strength, endurance, function, and cardio metabolic health.

Charlene is a member of MGFA’s Medical / Scientific Advisory Board and an active member of the Maryland, D.C. Delaware Chapter of MGFA. Charlene currently serves on the Resource and Development committee and the ad hoc Outreach committee.

Suzanne Ruff, PhD

Suzanne Ruff brings new skills and unique prospective to MGFA and its Board of Directors. She is a Psychologist with the Veterans Administration and is an accomplished clinical and research psychologist with experience in both the private and academic sectors. Through her clinical practice and training over the years, she has worked with chronic conditions and neurologic diseases, including adolescents with eating disorders, young and older Veterans with traumatic brain injury and poly-trauma, acute and chronic pain syndromes, and palliative care. She has adapted these clinical and research experiences directly toward becoming a resource for successful coping strategies for myasthenia gravis in the acute setting of crisis and as a chronic, lifelong medical condition. She advises on the distinct psychological needs of children, parents of children, young adults, and older individuals with myasthenia gravis. Her ideas are the basis for the “Mind and Body” approach and the quest to develop a “toolkit” that provides information and support to improve the quality of life for individuals with myasthenia gravis. Her research experience in Department of Health Services related to program development, professional education, and outcome research make her a timely addition as the MGFA develops a Patient Registry. Suzanne is an active member of the Ohio Chapter of MGFA. Suzanne is currently a member of the Board Development Committee, and the ad hoc Outreach Committee.

William Sauerwine

Bill is currently President & CEO of W.J. Sauerwine Custom Homes, Inc., an award winning, high-end home builder located in Windermere, Florida. In addition to founding and operating several successful businesses, he also has an extensive financial background. His banking career began in 1967 with The Philadelphia National Bank. He has held senior management positions during his banking career with the most recent being that of Executive Vice President and CFO. He has also served as Treasurer and CFO for the municipality of Lindenwold, New Jersey for 12 years where his responsibilities included budgeting, investments, accounting, and consulting to the mayor and council.

Bill attended Temple University in Philadelphia, Pennsylvania and the University Of Virginia Graduate School Of Consumer Banking. After graduation, his thesis was selected for placement in the school’s library and he was asked to join the school’s thesis staff where he served for five years. During his career, he has held several board positions. Bill is currently a member of the Finance Committee, Investment Committee, and the Resource Development Committee.

Allan Weiss, MD

As a previous owner of a single specialty neurology practice (prior to selling the practice to St. Anthony's Hospital in 2009) and with the experience of having seen almost 1000 myasthenia gravis patients since beginning his practice in 1993, Allan brings a logical, common sense approach to business management, as well as the issues affecting patients with myasthenia gravis. He is a strong believer in educating the patient about the disease. He feels that the more informed the patient, the better able the patient is to become a team player in their treatment and care.

Allan received his B.A. in Biology from UCLA and Master’s degree in physiology, spending his second year of his Master’s program performing research at the NIH. He received his MD from Hahnemann University (now Drexel University). His interest in myasthenia gravis goes back to his neuromuscular disease fellowship at UNC, Chapel Hill from 1991 to 1993. Since 1993, he has been in neurology practice in St. Petersburg with an emphasis on neuromuscular diseases. He was the President of St. Petersburg Neurology Clinic from 2001 to 2009. He has served as the medical advisor for the West Central Florida chapter (now Greater Florida chapter) since its inception in 1995. He has served as a member of the MGFA Medical/Scientific Advisory Board since 1996 and in 2006 was the recipient of MGFA’s Doctor of the Year Award.

Allan served as the Chief of Medicine at Edward White Hospital from 2001-2003. He currently serves as the Neurology Section Chief at St. Anthony's Hospital and also as its Medical Director for Stroke. He has been the team neurologist for the Tampa Bay Rays for over a decade. Allan currently serves on the Communications Committee and the ad hoc Outreach Committee.

National Campaign Chairperson

Robin Wright Penn

Staff

Tor Holtan, Chief Executive

Martha Jones, Chapter/Patient Services Manager

Dana O'Donnell, Patient Services Coordinator

Counsel

Webster, Chamberlain & Bean

Auditor

Ulbrich & Company, P.C.