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Who's Who at MGFA?

 

Executive Committee

 
Edward Walsh, Chair
 
Ed became the MGFA Chair in April of 2015. He was previously the Treasurer after becoming a Board member in 2010.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 private equity ventures where he is 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. He chairs the Executive Committee.
 
  
Susan Klinger, Vice Chair
 
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 and crisis 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 former Metro NY Chapter of MGFA, joining its board of directors in 2005. She joined the national MGFA board of directors in 2008. 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 the Baruch College graduate Business Management School. She is the Vice Chair of the National Board. 
 
 
Denise Rossi, Treasurer
 
Denise brings more than 30 years of Information Technology experience to the MGFA. She has particular expertise in Applications development and Project Management. Currently Denise is a SVP at SunTrust Bank in Atlanta responsible for Production Services for the Consumer and PW business. Her previous experience includes several senior Technology Management positions both in the US and Europe for Citigroup, as well for FIS in Chicago.   She earned her B.B.A. in Business Computer Information Systems, Internet and E-Commerce Technologies from Hofstra University. Currently Denise is enrolled at University Southern California of pursuing her Master’s degree in Social Work. Denise serves on the Communication Committee.
 
 
Suzanne Ruff, PhD, Secretary
 
Suzanne is a recently retired 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 currently a member of the Outreach Committee.
 
 
Jennifer Cote
 
Jennifer is an 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, who is a myasthenia patient, was involved in building the Atlanta-area support group for MG patients and their caregivers. Jennifer currently serves as a member of the Executive Committee, and the Special Committee for Outreach, in addition to other subcommittees and special ad-hoc committees from time to time.
 

Marcia Lorimer

Marcia is Assistant Professor Emeritus at Duke University School of Nursing, where she served as lead faculty and director of the nationally ranked pediatric nurse practitioner major for many years. She is a graduate of the Mount Sinai Hospital School of Nursing, City College of New York (BS), Albert Einstein College of Medicine (PNP certificate), and the University of Virginia (MSN) Marcia was diagnosed with MG at age 10. She has served the MGFA Board in various capacities since being elected to her first term in 1991, including chairperson, committee chair, and NAB representative. She currently serves as a nonvoting member of the executive committee and chair of the audit committee.
 
 
Jurgen Venitz, MD, PhD
 
Jürgen is a Professor of Pharmaceutics, School of Pharmacy, Medical College of Virginia of Virginia Commonwealth University in Richmond, VA.  He is a clinical pharmacologist, involved in early clinical drug development, translational research and teaching.  His expertise in drug development and translational sciences has led to appointments on FDA Advisory Committees and NIH review panels.  Jürgen was diagnosed with refractory MG in 2005 and has been a member of the MGFA Board of Directors since 2008.  Jürgen received his M.D. from the Universität des Saarlandes, West Germany (1981) and his Ph.D. in 1986. Jürgen is a M/SAB member and serves on the Audit and Finance Committees.
 
 
Board of Directors
   
 
Phil Cogan
 
Phil Cogan is a communications and crisis management practitioner with more than 35 years of experience serving organizations in the corporate, government and non-profit sectors. His specialties include program promotion, crisis response and damage mitigation, vulnerability audits, media relations, training, and emergency simulations. Cogan’s crisis management experience includes management positions in the U.S. military, the U.S. executive branch, county law enforcement, and the American Red Cross, all of which followed a dozen years as a broadcast journalist. Cogan was vice president of communications for the Export-Import Bank of the United States, the official export credit agency of the U.S. At the Federal Emergency Management Agency (FEMA), he was deputy director of Emergency Information and Public Affairs, and led or participated in the communications team response to more than 100 Presidentially-declared major disasters. In 2001 he directed federal media relations activities at Ground Zero following the attacks on the World Trade Center. He served eight years as a sworn, volunteer police officer in the Commonwealth of Virginia. He is a former board member of the American Red Cross in Seattle. He currently serves as a disaster response team leader in the Greater New York Region of the Red Cross while also providing communications support. A Navy public affairs officer, he retired at the rank of Commander. He earned a B.A. in speech and oral communications from UCLA, and a Master’s Degree in Communications. Cogan is married and the father of two.
 
 
Kim Eldridge
 
Kim Eldridge is currently working for Humana, Inc. as a Microsoft SharePoint Subject Matter Expert. She has a Bachelor of Science in Computer Information Technology from Western Kentucky University. When she’s not working, Kim spends countless hours supporting the MG community. She currently runs the local Support Group in Louisville, KY. She is an administrator for three online support communities, and participates in others. She works to educate mysathenics on how to advocate for themselves, helps the newly diagnosed navigate their new world of the chronically ill, and educate people on the disease. Kim helps coordinate the local MG Walk and was the 2017 Walk Hero. She also commits time to MGFA committees and sub-committees, such as the Patient and Community Services committee, Partners in MG Care, and MG Education.
 
Linda L. Kusner, PhD

Linda L. Kusner, PhD is the Chair of MGFA’s Medical/Scientific Advisory Board. She is an Associate Professor at George Washington University in the department of Pharmacology and Physiology. Dr. Kusner leads a research laboratory that focuses on the development and testing of therapeutics for MG. Dr. Kusner, along with Dr. Ted Burns of University of Virginia, past Chair of MGFA’s Medical/Scientific Advisory Board, organized the 13th International Conference on Myasthenia Gravis and Related Disorders that was held in New York City with the support of New York Academy of Sciences, National Institute of Health, and Myasthenia Gravis Foundation of America.
 

Charlene Hafer-Macko, M.D. 
 
Charlene Hafer-Macko, M.D., Associate Professor of Neurology, 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) and other neurological disabilities. Her 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 serves on the Education and Advocacy Committees. She serves on the MGFA Board of Directors and the ad hoc Outreach committee. She also supports individuals living with MG in the mid-Atlantic region.
 

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.
 

Celia R. Meyer
 
Celia Meyer is a RN and a Navy veteran. Celia is a graduate of Columbia College with a B.S. in Information Science. She received her nursing degree from Motlow College. Celia was diagnosed with myasthenia gravis in 2013 after being symptomatic for many years. As a member of the MGFA’s Board of Directors, Celia currently serves on the MG Patient Registry Committee and the Communication Committee. Celia also assists the MGFA with their Facebook page and social media. Celia is a tireless advocate for the MG Patient Registry, and her work in promoting the importance of the Registry to MG patients has been a driver in doubling the number of participants.
 
Jeffrey Pilgrim
 
Jeff Pilgrim, JD is an experienced attorney and founding partner of Pilgrim Christakis LLP, a law firm which focuses on the representation of banks and other financial services providers in individual and class action cases filed across the country. Jeff is a graduate of the University of Iowa, with a B.A. in Finance, and he received his law degree, magna cum laude, from the Chicago-Kent College of Law. Jeff has had MG since 2004. As a member of the MGFA’s Board of Directors, Jeff currently serves as the Chairperson of the MGFA’s Bylaws Committee and member of the Audit and Board Development/Nominating Committees.

 
Robert Ruff, MD   
 
Robert L. Ruff, MD, PhD is the former Chair of MGFA’s Medical/ Scientific Advisory Board. He is a neurologist and biophysicist. Dr. Ruff is professor emeritus of Neurology and Neurosciences at Case Western Reserve University School of Medicine and retired from the Department of Veterans Affairs where he served as acting Director of Rehabilitation Research and Development Service and National Director for Neurology. Dr. Ruff has been involved in MG research and treatment for more than 30 years. Dr. Ruff serves as a member of several committees.
 
Katherine Ruzhansky
 
Katherine Ruzhansky, MD is currently working as a clinical neurologist, Assistant Professor of Neurology and Director of the EMG lab at the Medical University of South Carolina. Prior to relocating to Charleston, SC, she trained at Yale-New Haven hospital and Columbia University Medical Center in neurology and clinical neurophysiology. Her clinical focus has been the diagnosis and treatment of neuromuscular disorders. Since coming to Charleston, she has met many wonderful people and patients who are active on the local and national level in helping bring awareness to Myasthenia Gravis. Treating patients with MG is both challenging and rewarding. Although it is a treatable disease, living and dealing with chronic illness poses daily challenges not only for patients, but also families and caregivers. By getting involved with the local support group and by actively supporting the MG community, she hopes to grow as a physician and a person.
 
 
Tommy Santora
 
Tommy is in public relations/marketing for the law firm of Taylor Porter, one of the largest and longest-standing law firms in Baton Rouge, Louisiana. 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 $150,000 in five MG fundraising Walks. Tommy has had MG for 25 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. Tommy is the current Chair of the Communications Committee.
 
 
Mike Ursic
 
Mike Ursic is a Project Engineer for FCX Systems, a small manufacturing business that designs, builds and installs power supplies for commercial and military aircraft around the globe. In addition, Mike provides engineering consulting services in high-pressure waterjet technologies. Mike is a graduate of West Virginia University, with a B.S. and M.S. in Mechanical Engineering. Mike was diagnosed with MG in 2007. Mike has continuously served on the communication committee, Patient and community services committee, and is the lead for the Myasthenia Advocacy for Young Adults (MAYA) committee.
 
 
Allan Weiss, M.D.
 
Dr. Weiss has been in private practice in St. Petersburg, Florida since 1993. His neurology practice has a primary focus of caring for patients with neuromuscular diseases including myasthenia gravis. He has had the good fortune to care for more than 1000 patients with myasthenia gravis. He received his M.D. from Hahnemann University (now Drexel University) where he began to show interest in neuromuscular diseases. He completed his neurology residency at VA Medical Center, West Los Angeles in 1991. He then completed his 2-year neuromuscular diseases fellowship at University North Carolina, Chapel Hill in 1993 where he was able to develop an interest in the care of patients with myasthenia gravis under the guidance of Dr. James F. (Chip) Howard, Jr. He has served as the MDA Clinic Director in St. Petersburg since 1994 and has also participated in the MDA Clinic in Tampa since 2001. He has served as the medical advisor for the West Central Florida chapter (which became the Greater Florida chapter before becoming the St. Petersburg support group) since its inception in 1995. He attends most monthly meetings. He has served on the MGFA Medical/Scientific Advisory Board since 1996. He was the recipient of the 2006 MGFA Doctor of the Year award. He has been a member of the MGFA Board of Directors since2011. He currently serves on the MGFA Communication Committee and Board Development Committee. He has served as the neurologist for the Tampa Bay Rays since 1999.
 
  
Annette Zampelli, MSN, CRNP, IgCN
 
Annette Zampelli is a family nurse practitioner currently employed as an Infusion Science Specialist for CSL Behring. She functions as an educator, trainer and preceptor in this role. She has been published over 20 times on various topics from asthma and allergies to use of immune globulin either subcutaneously or intravenously in immune deficiency and neurological diseases. She presents regularly at public and professional meetings and conferences. Her over 15 years of experience in immunoglobulin therapy has made her an expert in the field. Her past professional experiences include executive board member and treasurer of the Association of Asthma Educators, vice president and president for the Central PA Association for Nurse Practitioners and member of the nurse advisory committee for the Immune Deficiency Foundation. She continues to be an active member for the Boy Scouts of America as a district representative and holds a chair position for fundraising in this role.
 
 
 
Staff
 
Nancy Law, Chief Executive Officer
Beth Ulbrich, Chief Financial Officer
Kathleen Brown, National Program Director
Rich Mauch, National MG Walk Director
Nakeshia Betsill, Volunteer Program Manager
Lawrence McClean, Patient Services Coordinator
James Brannigan, Program Coordinator
 
Counsel
 
Webster, Chamberlain & Bean
 
Auditor
 
Desmond & Ahearn

 

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