MGFA 2019 National Conference
 
Rudrani Banik, MD
Dr. Banik has thirteen years of training at some of the finest medical and eye institutes in the country. She graduated with a B.A with Honors and M.D. from Brown University. She trained in Internal Medicine at Mount Sinai Medical Center in Miami, followed by Ophthalmology at the University of California, Irvine. She went on to pursue Neuro-Ophthalmology at the Wilmer Eye Institute at Johns Hopkins.
 
She has served on full-time faculty at Albert Einstein College of Medicine, Bronx-Lebanon Hospital Center, and New York Eye and Ear Infirmary of Mount Sinai.
 
Dr. Banik is founder of Envision Health NYC, a private practice based on the Upper East Side in New York City. She is Associate Professor of Ophthalmology at Mount Sinai Icahn School of Medicine. Dr. Banik has won many teaching awards and also serves as principal investigator for 5 multi-centered clinical trials in neuro-ophthalmology. She has authored numerous articles and has presented at national and international meetings. Dr. Banik is a member of the American Academy of Ophthalmology’s Exam Development Committee and helps to set the standards for board certification in her field.
 
Ashley Bermeo
 
Ali Bozorg, MD
Dr. Ali Bozorg obtained his MD from the University of Pittsburgh School of Medicine. He completed his residency training in neurology, along with fellowships in Epilepsy and Sleep Medicine at University of South Florida, where he subsequently served as faculty in departments of neurology and neurosurgery for more than 5 years. He has been a medical director at UCB for 4.5 years, and is currently the program physician for the Rozanolixizumab program. He has authored/coauthored several book chapters and papers in peer-reviewed journals.
 
Christina Coquery, PhD
Dr. Christine Coquery has been involved in Immunology research for over 13 years. She received her PhD in Immunology from the University of Virginia, after completing a Masters in Human Immunology at the Baylor Institute for Immunology Research. Her Academic and Industry research has focused on the role of innate and adaptive immune cells in systemic and organ-specific autoimmune and inflammatory disease. Dr. Coquery has published extensively and holds several patents for work done in autoimmune and rare diseases. Dr. Coquery has held positions at GlaxoSmithKline and Roivant and currently is the Senior Director of Immunology at Immunovant where she is leading the RVT-1401 program for the treatment of Myasthenia Gravis.
 
Elaine Deloach

I earned my law degree from Loyola Law School in New Orleans in May 1983. After 5 1/2 years in private practice, I started work at the Social Security Administration Office of Hearing Operations as a staff attorney drafting decisions for an Administrative Law Judge who heard disability claims. I moved into management in December 1999, supervising both writers and technical staff who provided the support for a group of Administrative Law Judges. In August 2010 I received my appointment as Administrative Law Judge. I retired in January 2019 after 30 years of government service.

My spouse, Steven Graalmann, was diagnosed with MG in 1987. Two years after my joining Social Security, he came to work there as a staff attorney. He also went into management and received his appointment as an Administrative Law Judge in April 2008 and served until he died in March 2016.

 
Karla Drenner
 
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, Kentucky. 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. Kim is a member of the MGFA Board of Directors and commits her time to the Patient and Community Services, Partners in MG Care, and Advocacy Committees.
 
Kenji Fujita

Dr. Kenji Fujita is Executive Medical Director of Clinical Development at Alexion. He is responsible for overseeing clinical aspects of the neurology programs, including trials in MG and NMO. Prior to his work in neurology, Kenji led a program in metabolic disease (hypophosphatasia).

Prior to joining Alexion, Kenji worked at Merck & Company, where he had a variety of roles, most recently as clinical lead responsible for overseeing clinical trials in the emerging market countries. Prior to that, he was a medical director in the cardiovascular therapeutic area, where he conducted trials in heart failure, atrial fibrillation, and hypertension.

Kenji’s clinical background is in cardiology. He received his MD from Harvard Medical School, followed by residency in internal medicine and fellowship in cardiology at Columbia University. He is board certified in Internal Medicine, Cardiovascular Diseases, and Nuclear Cardiology and maintains an appointment as Assistant Professor of Clinical Medicine at Robert Wood Johnson University Hospital.

 
Samantha Gardner
Samantha (Sam) Gardner accepted a position as the National Director of Fundraising with the MGFA in October, 2018. Her primary role is engaging with and supporting participants, volunteers and sponsors for the MG Walk in addition to assisting with fundraising overall. She brings over 20 years’ experience in non-profit fundraising and is honored to be working for the MGFA. She is inspired by all those affected by myasthenia gravis that she has connected with thus far. Sam and her husband Sammy are retired Air Force and live in Cheyenne, WY. They have 2 children and 5 grand-children that live in Illinois. She enjoys golfing, traveling and spending time with friends and family. Sam is grateful to be working with such a passionate team, all striving for a world without myasthenia gravis.

 

 
Raghav Govindarajan, MD
Dr. Govindarajan is the associate medical director of the neurology outpatient clinic, MDA/ALS clinic director and EMG/neurophysiology lab director at University of Missouri. He is board certified in neurology and neuromuscular medicine. He runs a large MG clinic through a multidisciplinary team, in addition to a support group for MG patients through MGFA. He has many peer-reviewed publications and more than 30 teaching awards. He has been inducted into Alpha Omega Alpha, Gold Humanism Honor Society, Sigma Xi. He is an elected fellow of the College of Physicians of Philadelphia and was honored with Leonard Tow Humanism award by Arnold P. Gold Foundation in addition to the Schwartz Compassionate Caregiver award for the care of his patients.
 
Colleen Graham
Colleen Graham has over 20 years of extensive Clinical Research experience. She began her research career at a Clinical Site, and has held a variety of operational positions from an Ethical Review Board to CROs and Pharmaceutical companies, both large and small. Her experience includes Phases I-IV drugs, biologics and device studies across a variety of therapeutic areas working with companies such as Biogen, Pfizer, and Takeda Pharmaceuticals. Her operational experience includes resource management, process development and she has managed large-scale global studies. Colleen is currently Director of Clinical Development Operations at Momenta Pharmaceuticals, where she responsible for clinical development of M281 in rare immune-mediated diseases.
 
Niki Grossheim
Niki has been living with Myasthenia Gravis for the last 17 years. She has not let the diagnosis stop her from accomplishing the things she has set out to do. She graduated from the University of Wisconsin-Green Bay in 2010 with a Bachelor of Science degree in Human Development. She married her supportive husband, Andrew, in October 2014 and gave birth to a beautiful, healthy baby boy in October of 2015 and another healthy baby boy Nov 2018. In addition to being a mom and wife, she is also quite active in the MG community.
 
Niki facilitates the Northeast Wisconsin Support Group for the last 9 years. Niki's experience as a young person living with MG, and her willingness to share her experiences are a great benefit to the MG community. Niki was the first Northern WI MG Walk Hero in 2015 and has organized a few of her own fundraisers over several years raising over $10k. She is also a current member of the MG Patient and Community Services Committee, The MG Walk Committee, and the MAYA Myasthenia Advocacy for Young Adults group.

 

 
Charlene Hafer-Macko, MD
Charlene Hafer-Macko, M.D. is the Associate Professor of Neurology, Neuromuscular Division, and Director of the University of Maryland Myasthenia Gravis Clinic. She 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 has an active myasthenia gravis practice at both the University of Maryland and Baltimore VA. Her research interest focuses on promotion health and wellness for individuals with MG, other neurologic diseases and aging. Charlene is a member of MGFA's Medical / Scientific Advisory Board and Board of Directors. She serves as Chair to the MGFA Advocacy Committee and will represent MGFA in the 17th Annual Academy of Neurology on the Hill Summit in February 2019. She is also an active member of the Mid-Atlantic MG support groups.
 
Michael Hehir
Dr. Hehir is an Associate Professor and Division Chief of Neuromuscular Medicine in the Department of Neurological Sciences at the Robert Larner, MD College of Medicine at the University of Vermont. As a neuromuscular neurologist, his clinical, research, and educational interests are in the evaluation and management of adult and pediatric patients with neuromuscular disorders, particularly myasthenia gravis. Dr. Hehir has a strong track record of leading collaborative, multi-center clinical research projects related to the care of patients with myasthenia gravis. He is the current co-chair of the Education Committee for the Scientific Advisory Board of the MGFA and was the Co-Chair of the annual MGFA Scientific Session Meeting from 2015 to 2018. He was also named the MGFA Physician of the Year in 2016. At UVM, Dr. Hehir is the director of the ACGME accredited neuromuscular medicine fellowship and also direct the neuromuscular curriculum for the UVM neurology residents. Dr. Hehir's current research efforts are directed at improving care and reduce cost for MG patients. He is leading the development of a multi-center clinical trial to determine to determine the safety and quality of life impact of systematically decreasing immunosuppressant medication dosages in patients with myasthenia gravis who have prolonged periods of MGFA Minimal Manifestations and Pharmacologic Remission. Dr. Hehir is also developing a new method to measure the burden of treatments for myasthenia gravis and other neurological disorders through an American Academy of Neurology, American Brain Foundation, MGFA Clinician Scientist Development Award in Myasthenia Gravis.

 

 
Gary Ingenito
Gary Ingenito, MD, PhD, joined Catalyst in July 2015 as Chief Medical Officer. Dr. Ingenito brings more than 25 years of knowledge and experience in the field of pharmaceutical development: including drugs, biologics, and combination products. During this time, Dr. Ingenito held executive responsibilities for clinical research, regulatory, drug safety, and medical affairs at pharmaceutical companies and contract research organizations. Dr. Ingenito initially joined Sandoz Pharmaceuticals in the neuroendocrine group and progressed to become head of medical affairs. He spent 8 years at Otsuka Pharmaceuticals, overseeing the approval of anti-infective, cardiovascular, and central nervous system products. Dr. Ingenito has held positions at Corning-Besselaar, Angiotech Pharmaceuticals, Biotest Pharmaceuticals, and Boehringer-Ingelheim Pharmaceuticals. After obtaining his Bachelor of Arts degree from Johns Hopkins University, Dr. Ingenito earned his medical degree at Jefferson Medical College, and a doctor of philosophy degree from Thomas Jefferson University. He completed a post-graduate residency in neurology at the University of Miami, Jackson Memorial Hospital.
 
Vita Kesner, MD
Dr. Kesner is an Assistant Professor at the Emory University Neurology Department. She completed her Neurology Residency at Case Western Reserve University and then Clinical Neurophysiology-Neuromuscular fellowship at Emory. With specific interests in the fields of myasthenia gravis and peripheral nerve disorders, she established a specialized clinic for patients with myasthenia gravis and a combined neurosurgery and neurology multidisciplinary Peripheral Nerve clinic at Emory. Dr. Kesner also performs complex neurophysiological testing during surgical procedures including electroencephalography, evoked potentials, and electromyography (EMG). Dr. Kesner is the director of the EMG Laboratory at Emory University.

 

 
Wilma Koopman, NP

Wilma graduated from Hamilton Civic Hospitals 1973 (RN), and the University of Western Ontario ( BScN, 1992; MScN 1998, Tertiary Care Nurse Practitioner Certificate 2000). She also completed the Postgraduate course in Neurological and Neurosurgical Nursing at the Montreal Neurological Institute in 1977.

Wilma worked as a staff nurse in Neurosciences at the Hamilton General Hospital upon graduation as an RN in 1973, moving to the Clinical Neuroscience Unit, University Hospital in 1975. Wilma was hired at University Hospital as the research nurse for the International GBS Plasmapheresis trial in 1981, where her career in Neuromuscular diseases began. In 1982, the Adult Neuromuscular Clinic Services Clinic was launched and Wilma was hired as the nurse coordinator and since 1999 as the Nurse Practitioner. In 1995 she worked for 4 years in the Multiple Sclerosis Clinic while completing her Master’s Degree. She has collaborated on many research studies in the multiple sclerosis and neuromuscular disease arena. She has authored and co-authored many peer reviewed articles and given oral presentations on MS, GBS, CIDP, MD, and Myasthenia Gravis. She is certified in neuroscience nursing and is affiliated with professional nursing organizations nationally and internationally (CANN, AANN, and WFNN). She was chair of the Nurses Advisory Board for the Myasthenia Gravis Foundation of America for 7 years. She serves on the Board of the GBS/CIDP foundation of Canada. She is currently pursuing her PhD at Western University in Health and Rehabilitation Sciences with a focus on health professionals’ education.

 
Nancy Law, CEO, MGFA
Nancy Law has served as CEO for the Myasthenia Gravis Foundation of America since March 2016. She was a board member for the organization for 8 years prior to accepting the CEO position. Nancy retired in 2015 from a 28 year career with the National Multiple Sclerosis Society, where she served as an Executive VP, leading the Society’s efforts in Programs, Services and Clinical Care, working to achieve high quality programs for people with MS and their families nationwide, and to increase access to quality health care.
 
She represented the MS Society on the MS Coalition, helping to unite MS organizations to work together on research, patient services and advocacy—and is working at MGFA to unite the diverse organizations of the MG Community. Nancy has been a featured speaker at numerous national and international conferences. After retiring from the NMSS and before taking the MGFA CEO position, Nancy provided consultation to the pharmaceutical industry on program design and strategies to enhance patient/physician communication. 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 MS Society she had work experience in child welfare, foster home certification and supervision, and volunteer management.
 
Ikjae Lee
Dr. Ikjae Lee is a board-certified neurologist and neuromuscular specialist, currently working as an assistant professor at the University of Alabama at Birmingham. He has completed his neurology residency and neuromuscular fellowship at the University of Cincinnati in Ohio. As a clinician, his passion lies in taking care of patients with neuromuscular disorder especially myasthenia gravis. He is actively involved in various research projects including data analysis of MG patient registry that has led to publication of these results in peer reviewed journals. It is Dr. Lee’s hope that the patient’s effort in participating for this registry can be translated into a valuable information that can help the overall myasthenia gravis community.
 
Nicholas Leupin, MD, MPA
Nicolas Leupin joined argenx as CMO in February 2016. Dr Leupin brings clinical and industry expertise in medical oncology as well as experience in drug development to the Company. In his previous role, Dr Leupin was the clinical lead of several hematology/oncology clinical trials, including both academic cooperative group and industry-sponsored trials, several of them through to registration. Dr Leupin, who is board certified medical oncologist went to medical school in Bern, Switzerland. He first started his career in the department of pathology of the University of Bern where he discovered his passions for tumor biology, research and teaching. He continued with a fellowship in cancer molecular biology. After 2 years at the bench he returned to clinical medicine. He spent several years in academia, at the bedside of patients and specialized in medical oncology with a special interest in hematological oncology. Dr. Leupin became member of the Swiss Cancer Research Group (SAKK) and board member of the lymphoma team. After those years of clinical activity he was offered to join Celgene to help building the clinical development department in Europe. He was assigned to the lymphoma team, some years later to the myeloma team, Celgene’s prime indication, where he was instrumental in leading the European teams and in bridging with the US teams. Nicolas was Global Clinical Lead for several compounds up to phase III, where among other activities he was responsible for the summary of efficacy of registration dossiers that lead to successful European and American registrations. Nicolas Leupin holds an MBA with a focus on negotiation and conflict management, participated in various postgraduate courses, including the IMD in Lausanne. He keeps an academic activity and is still lecturer at the University of Bern.

 

 
Yuebing Li, MD, PhD
Dr. Yuebing Li has served as a staff neurologist in the Neuromuscular Center at the Cleveland Clinic Foundation since 2012 and is currently an associate professor of neurology at Cleveland Clinic Lerner College of Medicine. Dr. Li completed his neurology residency at University of Cincinnati in 2002. He is board certified in Neurology and Electrodiagnostic Medicine (EMG). Dr. Li has published numerous articles on neuromuscular medicine and neurology, and received many teaching awards. He has also been voted as best doctors by Best Doctors of America since 2007.
 
Although he has a large practice that includes patients with various neuromuscular disorders, Dr. Li has a special interest in the diagnosis and treatment of myasthenia gravis. He serves as a member of the Medical and Scientific Advisory Board for the Myasthenia Gravis Foundation of America organization. He was a recipient of the Doctor of the Year Award from Myasthenia Gravis Foundation of America and he served as the National Myasthenia Gravis Walk Medical Chair in 2017. In March 2018, he was also elected as the National Medical Ambassador of the year by the Myasthenia Gravis Foundation of America organization.
 
Celia Meyer RN
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.
 
Rebecca Molitoris
 
Garry Morehouse

Garry Morehouse, from Midland Ontario Canada, has been active in sports most of his life. In recent years, he became such a pickleball enthusiast, that in 2018, he was inducted into the Midland Sports Hall of Fame for the sport.

In November 2017 at age 71, Garry was diagnosed with Myasthenia Gravis (MG). Exercise has been his lifeline in coping with MG; exercise has enabled Garry to get back in the game playing Pickleball four times a week.

 
Roger Morse
A lifetime resident of Maine who spent 43 years in the insurance industry prior to retirement in October 2018.

 

Before being diagnosed with MG in September 2012, he was an avid runner, a certified long distance running coach and also spent 12 years coaching high school hockey.

Since his diagnosis, he has battled to get back to running while continuing to coach adult beginner runners. Along with MGFA Board Member Celia Meyer, he has worked to promote the MG Patient Registry in an attempt to increase the number of registrants.

He firmly believes that a positive attitude combined with humor can make life with MG easier. That belief lead to the creation of the Curing Myasthenia Gravis with Duck Tape Facebook group.

 
Julia Naumes, OTR/L
Julia Naumes, OTD, OTR/L is an Occupational Therapist practicing in an outpatient hand therapy clinic in Bremerton, Washington. She was diagnosed with MG in 2011 while completing her pre-requisite coursework for her doctorate in OT. She was not aware of the MGFA until her insurance company denied treatments in 2014. Since then she has been an active member of the Pacific Northwest support groups and presented at support groups in Oregon, Washington, and Maryland. Additionally, she has attended and presented at the MGFA annual conference multiple times, has conducted and published research on MG, and was the 2016 Portland MG Walk Hero. She has a Bachelors of Science in Exercise Science Motor Behavior and a Doctorate of Occupational Therapy. During her Doctoral Experiential Internship working alongside Dr. Charlene Hafer-Macko at the University of Maryland and the Baltimore VA, their team conducted, analyzed, and published various research projects on the topics of promoting fitness and functional performance in the MG population. She is very passionate about improving quality of life and engagement in exercise in the MG population. She and Dr. Macko are currently in the process of analyzing and publishing research on prevalence of Falls within the MG population, so be on the lookout for that!
 
Han Phan, MD
Dr. Han Phan is a board certified neurologist. She is currently the director of clinical research at Rare Disease Research, LLC and an Associate Professor at the University of Alabama where she is the director of the Muscular Dystrophy Association clinic. She has over 10 years’ experience treating patients with neuromuscular disorders such as Myasthenia Gravis, Duchenne Muscular Dystrophy, and Spinal Muscular Atrophy; additionally she has extensive experience serving as principal investigator on clinical research trials relating to neurological conditions. She also serves as FDA pediatric advisory committee and CDC guest researcher in the Birth Defects and Newborn Screening Branch.
 
Angela Pontius
Angela is the Director of Clinical Operations and Patient Advocacy at Ra Pharmaceuticals where she is the clinical operations lead for the myasthenia gravis program and serves as a champion for patient advocacy efforts. Prior to joining Ra Pharma, she led programs in other rare disease indications including spinal muscular atrophy and Duchenne muscular dystrophy. Angela has been in the clinical research industry for over 12 years, having experience working at clinical sites, within a CRO, and at both small and large pharma companies. Angela’s passion for helping patients began when she was a child and her mother was diagnosed with recurring brain tumors. Acting as a caregiver and translator for her mother at such a young age, she experienced firsthand the difficulties and challenges that patients have to overcome. Angela holds a Bachelor’s degree in Pre-medicine and French Studies from the University of Minnesota.
 
Amanda Pratt, MSW, LCSW
Amanda loves to shine light on topics that are rarely talked about. A Michigan Native turned Floridian, she graduated from Central Michigan University with a Bachelor's degree in Psychology in 2009 and went on to graduate from the University of Michigan in 2013 with a Master of Social Work degree. While spending years volunteering locally and globally, and working to become a School Social Worker for students with disabilities, she suddenly became diagnosed with several incurable chronic diseases. This not only changed her life, but it changed her perspective. She's learned firsthand that there is a lack of support around strategically & emotionally coping with this major life change. After years of struggling, she took matters into her own hands and started a therapy & coaching practice that serves, educates and speaks out in support of people living with chronic health conditions. She is a contributing writer for 'The Mighty', speaks locally and nationally and creates online resources catering to the chronic illness community.
 
Michael Pulley, MD, PhD

Michael Pulley, MD, PhD is an Associate Professor of Neurology and Director of the EMG Laboratory at University of Florida Health Science Center, Jacksonville. Dr. Pulley has expertise in diagnosis and management of neuromuscular disorders. He has a special interest in management of myasthenia gravis and follows nearly 400 patients with MG and 10-15 patients with LEMS. Dr. Pulley is also experienced in electrodiagnosis of nerve and muscle disorders and performs over 1500 EMG and nerve conduction studies each year. Dr. Pulley is the Director of the UF Health Jacksonville ALS Association Certified Center of Excellence and actively follows approximately 50 ALS patients at any given time. Dr. Pulley is a Member of the Medical/Scientific Advisory board of the Myasthenia Gravis Foundation of America, the Northeast ALS Consortium and the Muscle Study Group. Dr. Pulley has participated in clinical research trials for myasthenia gravis, LEMS, ALS, multifocal motor neuropathy (MMN), dermatomyositis and Chronic Inflammtory Demyelinating Polyneuropathy (CIDP).

 
Shruti Raja, MD
Shruti M. Raja is a board certified neurologist with subspecialty training in neuromuscular medicine, electromyography, and clinical drug development. She has experience in clinical trials and neuromuscular outcomes research. She received a Clinical Research Training Fellowship Grant in Autoimmune Neuromuscular Disorders sponsored by the AANEM (2017) and was recently awarded a Clinician Scientist Development Award sponsored by the MGFA and American Brain Foundation (2019). Her research interests include autoimmune neuromuscular disorders, particularly those of impaired neuromuscular transmission, and development of clinically-relevant methodologies to assess therapeutic response. She is faculty within the Neuromuscular Division at Duke University Medical Center in Durham, NC.

 
Michael Rivner, MD

Dr. Rivner is a Charbonnier Professor Emeritus at Augusta University (formerly Medical College of Georgia). He is director or the EMG lab, Neuromuscular Clinics and ALS clinics at Augusta University. He is Director of the ALS and Neuromuscular clinics at Navicent Rehabilitation Hospital in Macon Georgia. He currently involve in research in LRP4 and Agrin positive Myasthenia Gravis and is involved in several clinical research studies in Myasthenia Gravis. He received his MD degree from Emory University and did his residency and Fellowship training in Neurology and Neuromuscular diseases at the Medical College of Georgia. He has been a member of the Neurology faculty at Augusta University since 1984.

 
Ricardo Roda, MD, PhD
 
Alexis Rodriguez
Born in Manhattan NYC, raised and educated in Mayaguez, Puerto Rico and Atlanta GA. Married to Kathryn (23 years) and have three kids, Analisa (17), Madelyn (15), Esteban (5). Twenty years ago he was diagnosed with Myasthenia Gravis. Since then, Alexis has taken the positive approach on how to handle this disease. “The cup is half FULL, not half empty” Alexis has lead the Georgia MG support group for the last 6 years, and works hard to provide a welcoming and hospitable environment for all patients and their caregivers. Fluent in Spanish and English, Alexis studied Music Business at the Art Institute of Atlanta and Business Administration at Shorter University Atlanta, GA.
 
Emma Rooney
 
Betty Ross
As the Director of Development for MGFA, Betty Ross is responsible for providing strategic direction and development of fundraising strategies including special events, individual giving and corporate partnerships. She introduced a Do It Yourself Fundraising website making it easier for volunteers to turn a personal passion into a fundraising opportunity for MGFA. 

Betty’s fundraising career spans more than 40 years. Betty was the Vice President of Fundraising for the National Multiple Sclerosis Society leading nationwide events before retiring in 2016. She joined the MGFA team part-time in early 2017 continuing the work she loves.

A native of Southern California, Betty lives and works from her home office in Denver with her husband, Richard, and their two Persian cats, Grady (18) and Sammy (16).

 
Robert Ruff, MD, PhD
Robert. Louis Ruff, M.D., Ph.D. is a member of the MGFA Board of Directors and the past Chairman of the Medical Scientific Advisory Board of the MGFA. In the past he twice served as a member of the Board of Directors of the National Director of the MGFA for three consecutive terms. He was a past Doctor of the Year for the MGFA. He received his M.D. and Ph.D. degrees from the University of Washington and did his Neurology residency and a postdoctoral fellowship in neurophysiology at Cornell Medical Center in NYC. His Ph.D. thesis dealt with electrical properties of the acetylcholine receptor (AChR). He was involved with diagnosis and treatment of myasthenia gravis and neuro-rehabilitation for over 35 years. His research interests include understanding how myasthenia gravis impairs neuromuscular transmission, recovery of motor function after stroke, recovery following traumatic brain injury (TBI) and the use of brain computer interface technology to improve communication ability for individuals with impaired motor skills. Before retiring at the end of July, 2014, he served as the Director of National Neurology Service and acting Director for the Rehabilitation Research and Development Service of the Office of Research and Development within the Department of Veterans Affairs. He was a member of the NICHD advisory council, which oversees the NIH medical rehabilitation research program and was a member of the NINDS advisory council which oversees research related to disorders of the nervous system, neurology and neuroscience for 12 years. He is Professor Emeritus of Neurology and Neurosciences at Case Western Reserve University.
 
Suzanne Ruff, PhD
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.
 
Katherine Ruzhansky, MD

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. Dr. Ruzhansky is a member of MGFA’s Board of Directors and commits her time to the MGFA Education Committee.

 
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.
 
Metta Sweet-Edge, LCSW

I read ahead in English class my junior year of high school and discovered the innocent heroine dies unjustly in the end. Stunned and saddened, I found my teacher in the hall the next day: that’s literature,” he said flatly. That didn’t satisfy me and never will. I am deeply moved by stories of people’s lives denied or diminished by some injustice, tragic flaw, or circumstance. Today I hear clients’ stories, help them heal, stimulate growth, and creatively write new endings.

I’ve practiced psychotherapy full time since 2005 until co-founding Edge to Edge Center in 2018. I earned my Master of Social Work in 2003 from the University of Georgia after changing careers from software technical communication and performance centered design—a life course change made due to my own empowered transformative work in individual and group therapy. I also earned a Master of Art in Teaching (MAT) in 1993 from Emory University and taught high school English.

 

 
Denise Trombly

Denise L. Trombly is a Library Media Technology Specialist in Nashua, New Hampshire. She holds Masters Degrees in Marketing and Education as well as Advanced Certification in Library Science.

Prior to her tenure in Education, Denise was Director of International Marketing at Digital Equipment Corporation, Associate Professor of Marketing at the University of Maine in Portland and VP of a Marketing Research firm.

She was diagnosed with MG in 2014 and serves as Secretary to the Board of Directors for the New England Chapter (MGANE) Denise is the editor of the semiannual MGANE newsletter which is distributed to members and physicians…and in her words “to anyone who is in the medical profession or is interested.” Denise works with the New England team in organizing the tremendously successful annual conference held in Massachusetts. The conference is attended by over 150 patients and caregivers. The conference provides attendees with useful information, interaction, a raffle and a great brunch.

She has previously presented and facilitated at MGFA conference in New Orleans, and continues to be active in promoting MG awareness.

Denise lives in Nashua and spends summers on her boogey board or learning through travel. Last years’ experience was at the Utah Opera and Theatre Festival. This year…who knows? Any ideas welcome!

 
Mike Ursic

Mike Ursic is a Project Engineer for FCX Systems located in Morgantown, WV, which designs, manufactures and installs power supplies for both commercial and military aircraft. He is also father to 3 year old Jackson with his better half Megan, who keeps him busy outside of his engineering efforts. Mike also a typical "motorhead" and loves to chat and work on anything that has an engine and wheels attached to it.

Mike was diagnosed with myasthenia gravis in late 2007 shortly after a major motorcycling accident. After healing from the injuries and infections from the crash, Mike was overcome with weakness throughout his body. Mike persevered through diagnosis, initial symptoms, and eventually returned to college after taking a short break to receive his masters’ degree in mechanical engineering at West Virginia University.

Mike continues to lead a “normal” life despite having myasthenia gravis. His determination and fortitude carry him through tough times when MG flairs. Mike is a strong advocate for exercise, athletics, and living life as active as possible for all myasthenics. Mike works continually with several MGFA volunteer committee's and serves on the board of directors for the MGFA. Mike looks forward to the day when MGFA’s mission is ultimately achieved: A world without myasthenia.”

 
Dawn Warner
Dawn first experienced symptoms of Myasthenia Gravis in 2001 and refused to be defined by it. She spent years looking for the right combination of natural products for her over all wellness. This research paid off! As of 8/27/2014 Dawn has been off of ALL pharmaceutical medications using her own theories about how she felt Myasthenia Gravis treatments should be approached. She is a co-support group leader in Atlanta. Dawn is an entrepreneur, philanthropist and an ordained minister. She volunteers monthly feeding and mentoring homeless LGBTQ youth and is a member of a Care Ministry Visiting Team. She owns a skincare line and a Dream Vacations franchise that she uses to provide non-profits with fundraising options as well as assist people with special needs. CruisingForMG.com
 
Dawn holds several post graduate diplomas and over 30 professional certifications in the travel, medical and wellness fields. She has been quoted in several publications for her business ventures and her holistic approach to wellness. She is currently working on a book about her wellness journey with MG due out in the fall of 2019. She is the author and subject of the website SnowFlakeWellness.com. Dawn has participated in every Atlanta MG Walk and received the first MG Walk Ambassador award in 2018. Dawn lives a full VERY life and enjoys learning, traveling internationally, cruising, photography, movies, teaching vision board classes, driving ATVs, snorkeling, and spending time with her family and friends. She believes in experiencing as much of life as possible.
 
Phillip Williams

Philip Williams was diagnosed with MG in September of 2012. He was able to achieve remission under the care of his doctor in Augusta, GA. He is known for being the bodybuilder with a muscle disease, but is so much more. He’s a father of 6, aircraft mechanic, personal trainer, model, competition prep coach and proud 6-year veteran of the U.S. Air Force. He has over 25 top 5 finishes in bodybuilding since 2011 in multiple organizations including the NPC, INBF, and SNBF.

Here is a list of his bodybuilding accomplishments:

2014: NPC Atlantic 1st place Heavyweight Bodybuilding and Overall winner

2015: Top 10 at NPC Jr USA’s Heavyweight Bodybuilding. 7th place

2018: NPC Charlotte Cup 1st place Heavyweight Bodybuilding and Overall winner

2018: NPC Eastern Seaboard 1st Place Heavyweight Bodybuilding and Overall winner

2018: NPC Eastern Seaboard Classic Physique Class D and Overall winner

2018: NPC Jr USA’s Classic Physique 3rd place finish

2018: NPC Universe 1st place Masters Over 35 Class C (Pro card earned)

2018: NPC Universe Classic Physique 2nd place Open Class D (Pro card earned)

 
Melissa Wolhust
Melissa Wohlust’s career and volunteer efforts carry a recurring theme of finding positive aspects in challenging situations. From her leadership in revitalizing blighted communities as an Economic and Community Redevelopment professional and Mediator/Consensus Builder; to her volunteerism as a Crisis Counselor, Homeless Assistance Advocate, and now as an MG Friend volunteer with the MGFA, Melissa strives to find solutions and offer assistance in seemingly dire times. Known as “Melissa Lynn” in her online support groups, she is an active online advocate for Myasthenia Gravis Awareness and education and co-hosts an annual Myasthenia Gravis Awareness segment for Clear Channel radio stations in South Florida. With the help of the MGFA, and an expert medical team, Melissa doesn’t let her over 30 years with Myasthenia Gravis stop her from embracing life.
 
Ashley Yee
As the Director of Patient Education, Ashley manages the extensive education and community programs. She works closely with the Patient Engagement team to assure patients and advocates have access to quality resources. Before joining Global Genes, Ashley worked as a behavior therapist in the autistic community providing counseling and group social services.

Ashley attended the University of California, Irvine, where she received her Bachelor of Arts in Psychology and Social Behaviors. She later received her Masters in Social Work from the University of California. When she’s not working, Ashley enjoys volunteering with Gamma Phi Beta as a financial advisor and philanthropy consultant, visiting Disneyland and spending time with her two puppies.

 
Annette Zampelli
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.