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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 Vice President of e-commerce at Maidenform, prior to that he was 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. He also serves on the Finance and the Web Redesign Committees. He is also a member of the Executive and Resource Development, Outreach, and Chapter Relations Committees.

Susan Klinger, Secretary

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 the Resource Development Committee. She also serves on the Executive Committee.

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 co-chairs the Audit/Risk Management and also serves on the Bylaws/Policies and Procedures Committee, and Executive Committee.

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 is the Chair of the Finance Committees.

Jennifer Faucett, Chapter Liaison

Jennifer is an associate attorney in the employee benefits and executive compensation practice of the law firm of Waller Lansden Dortch & Davis, LLP, in Nashville, TN. Prior to joining Waller Lansden she was an associate attorney in the Atlanta, GA office of Bryan Cave, LLP. 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 is the President of the Georgia Chapter of the MGFA and was involved in building the Atlanta-area support group for MG patients and their caregivers. Jennifer currently serves as the member elected Chair of the Chapter Relations Committee, Communications Committee, and the Special Committee for Outreach, in addition to other subcommittees and special ad-hoc committees from time to time.

Board of Directors

Ted Burns, MD

Dr. Ted M. Burns is the Chair of the Medical Scientific Advisory Board. He is also the recipient of the Myasthenia Gravis Foundation of America 2011 Doctor of the Year Award, is a Professor of Neurology at the University of Virginia. In 2008, he was named a Harrison Distinguished Chair at the University of Virginia. He is the Medical Director of the Neurology EMG Laboratory, Director of the Clinical Neurophysiology Fellowship. He is Vice Chair in the Neurology Department. He was Director of the Neurology Residency Program from 2004-2013.

Dr. Burns completed medical school at the University of Kansas. He completed neurology residency and clinical neurophysiology fellowship at the University of Virginia. He completed a peripheral nerve disease fellowship at Mayo Clinic in Rochester, Minnesota. After two years at Lahey Clinic in Burlington, Massachusetts, he returned to the University of Virginia. He has won teaching awards at the University of Virginia, including the Master Educator Award in 2006 and the Dean's Teaching Award in 2005. He is an elected member of the Academy of Distinguished Educators at the University of Virginia. He has been selected as one of the Best Doctors in America annually from 2005 - 2010.

Dr. Burns' main research interests include the construction and validation of outcome measures in myasthenia gravis. He and colleagues have developed two new MG-specific scales, the "MG-QOL15" and "MG Composite." The MG-QOL15 is a user-friendly scale that measures the quality of life of patients with MG. The MG Composite measures the manifestations of MG. Much of this research was sponsored by the MGFA. Another area of academic interest for Dr. Burns is the use of podcasting to educate physicians, patients and families. He is creator and editor of the American Association of Neuromuscular and Electrodiagnostic Medicine's podcast, creator and editor of the Neurology journal's weekly podcast and creator of the MGFA's podcast series designed to educate patients and families about practical aspects of MG. He is also a co-creator of the MGFA's "My MG" app.

Charlene Hafer-Macko, M.D.

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 BS in Chemistry from the Pennsylvania State University, MS in Biomedical Engineering from Case Western University, MD from Ohio State University, School of Medicine, Neurology Residency at University of California Los Angeles (UCLA), and Neuromuscular Disease Fellowships at UCLA and Johns Hopkins University .

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 cardiometabolic health.

Charlene is a member of MGFA's Medical / Scientific Advisory Board and Board of Directors. She is also an active member of the Maryland, D.C. Delaware Chapter of MGFA.

Jerry Faught

Jerry is a Director at Glendon Todd Capital and is part of the executive leadership team at Aztec Systems. His career has encompassed different leadership roles in the IT and technology infrastructure sectors with his expertise being revenue generation, change management, mergers and business transformations and building startup organizations. Shortly after his wife was diagnosed with MG in 2009 he became involved with the NW Texas Chapter of the MGFA where he serves as Chairman. Jerry earned his BS in International Business at Tarleton State University. Jerry serves on the Board Development/ Nominating Committee as well as the Chapter Relations Committee.

Wilma Koopman, RN (EC), BS(c)N MScN, TCNP, CNN(C), 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.

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 and Chapter Relations Committees.

Michael Lifshitz

Michael has served on the Boards of Turtle Nest Village and Kids@Home, two programs designed to help young people transition from Foster Care to successful adulthood. He was a member of the UJA (now JFNA) National Young Leadership Cabinet, serving on the Executive Committee, as well as the regional and national committees for Oversees Allocations. With UJA, he was trained as a solicitation trainer, and has traveled to communities throughout the country teaching lay leadership effective fundraising skills and techniques. He has also been honored to work with the Peter and Vicki Halmos Family Foundation, helping them to promote opportunities in the arts for young people. Where most people have no idea what MG is, Michael comes to MGFA as the nephew and the cousin of two people fighting MG.

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 serves on the Board Development/Nominating committee as well as the Audit and Resource Development Committees.

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 Committee and Co-Chairs Audit Committee.

Denise Rossi

With over 20 years of extensive technology and project management experience, Denise brings innovative abilities to MGFA. Her previous involvement with multiple non-profit organizations assures she will be a strong addition. As a mentor for Streetwise Partners, she volunteered her time for office administration, caregiver respite for LI hospice and reading to school children for NY Cares. She currently is the Client Relationship Delivery Manager for FIS in New York City. Denise holds strong knowledge dealing with Information Technology and her capability of analyzing issues and recommending solutions will be a strong asset to MGFA. She earned her B.B.A. for Business Computer Information Systems, Internet and E-Commerce Technologies from Hofstra University. Denise currently serves on the Resource Development, Outreach and Audit Committees.

Robert Ruff, MD, Ph.D.

Dr. Ruff is the National Chief of Neurology at the VA Medical Center. He is also the Chief of neurology in Cleveland. He is a neurologist and biophysicist. He is professor of Neurology and Neurosciences at Case Western Reserve University School of Medicine.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. He is the editor of the Journal of Rehab Research Development (JRRD). Dr. Ruff serves as a member of the Communications 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.

Tommy Santora

Tommy is in public relations/marketing for the law firm of Adams and Reese, one of the largest law firms in the Southeast with more than 330 attorneys and advisors in 16 offices in 15 markets throughout the Gulf Coast and Washington, DC. A New Orleans native, Tommy has close to 15 years of experience in the journalism and communications field, formerly working for The Times-Picayune, CityBusiness and The Daily-Review. In 2011, Tommy founded the New Orleans Myasthenia Gravis Support Group, and in two years, the group has grown to more than 100 MG patients, family members and friends. The group has also raised more than $70,000 in two MG fundraising Walks, most recently raising $45,000 with more than 20 corporate sponsors and gathering more 350 people at the 2013 New Orleans MG Walk. Tommy has had MG for 22 years since the age of 12. In 2013, Tommy was recognized among the Top 50 “Health Care Heroes” in the Volunteer category by New Orleans CityBusiness magazine for his professional contributions and community service. In 2012, he was named among Gambit Magazine’s “Top 40 Under 40,” and also selected among the HUGS (Hope, Understanding, Giving and Support) volunteers of the year by his law firm for community service. Tommy earned his Bachelor of Arts in Mass Communications from Louisiana State University in 2002. In his spare time, Tommy is a freelance reporter/photographer, part-time ACT/SAT teacher for The Princeton Review, and plays softball three times a week and bowls. Tommy is the current Chair of the Communications Committee and serves on the Outreach and Resource Development Committees.

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, Board Development Nominating Committee and the Resource Development 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 Communications, Finance, and Bylaws Committees.

Allan Weiss, M.D.

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.

Staff

Tor Holtan, Chief Executive

Kathleen Brown, National Program Director

Martha Jones, Chapter/Patient Services Manager

Karimah Day, Patient Services Coordinator

Counsel

Webster, Chamberlain & Bean

Auditor

Mueller & Co., LLP