The CMTA’s Advisory Board GrowsBecause patient advocacy is one of the missions of the CMTA, the CMTA Board of Directors created an advisory board whose members will offer insights into some of the important, but not neurological, issues facing people dealing with CMT. Our experts come from a wide variety of backgrounds and will be happy to assist CMTA members who have questions in areas in which they would be considered “experts.” Below, we introduce you to the current advisory board members.
Gregory T. Carter
Gregory T. Carter, MD, MS, is chief medical officer of St. Luke’s Rehabilitation Institute and clinical professor at Washington State University’s College of Medicine. His clinical and research interests center on rehabilitative and palliative care of neuromuscular disease, with a particular focus on pain, fatigue and quality of life. An avid researcher and writer, Dr. Carter has co-authored over 200 peer-reviewed publications, including the first studies on longitudinal physical performance, phrenic nerve and pulmonary function, and neuropathic pain in Charcot-Marie-Tooth disease. Dr. Carter is the recipient of several prestigious research awards from medical societies across the United States, including the Excellence in Research Writing Award from the Association of Academic Physiatrists for his work on exercise in animal models of neuromuscular disease. After graduating from Loyola University Chicago, Dr. Carter began his residency and fellowship at the University of California, Davis, earning a Master’s degree in Physiology along the way and serving as a MayDay Pain fellow at the University of Washington.
Ken Cornell, CO, is co-founder of Cornell Orthotics and Prosthetics in Peabody, MA. He has made managing patients with CMT a focus for 25 years. He is the orthotist at the CMTA Center of Excellence at the MGH Boston location. He is past president of the New England Chapter of the American Academy of Orthotists and Prosthetists. He has been an educator for dynamic carbon ground reaction AFOs and, their functional benefits for patients diagnosed with CMT. With his combined experience in gait training with AFOs, he manages patients orthotically to minimize deformity and restore a normal gait pattern with improved balance and propulsion.
Bob, a marketing and creative professional with more than 35 years’ experience, became involved with the CMTA when staff members made a presentation to his former employer. Moved by their stories and the CMTA’s mission, he decided to take an active role in supporting the organization and in 2013, he was named volunteer of the year. With his marketing, branding and design work, Bob provides a fresh and engaging approach to raising awareness about the CMTA’s mission and goals.
Katy Eichinger, PT, PhD, DPT, NCS, is an assistant professor of neurology at the University of Rochester School of Medicine and Dentistry. Outside of the classroom, Dr. Eichinger assists in providing clinical care for adult and pediatric patients with neuromuscular diseases as a neurologic certified specialist.
After receiving her MS in physical therapy from Springfield College and her doctorate from Upstate Medical University, Dr. Eichinger earned her PhD in health practice research at the University of Rochester. Her research and practice interests focus on health and wellness, outcome measures and balance. Additionally, Dr. Eichinger is a clinical investigator for natural history studies and clinical trials involving patients with CMT and several types of dystrophy.
Ashraf Elsayegh, MD, FCCP, is a distinguished physician and researcher based in Los Angeles, California. With sixteen years of experience, Dr. Elsayegh is a foremost expert in the field of pulmonary medicine as it relates to neuromuscular disease. He currently practices at Cedars-Sinai Medical Center and is an associate clinical professor at UCLA School of Medicine. His clinical and research interests revolve around respiratory function in the neuromuscular patient with special interest in diaphragm dysfunction. Dr. Elsayegh has authored and published numerous articles and textbooks in the field of pulmonary medicine and pulmonary complications in neuromuscular patients. In addition, he has lectured worldwide on these topics. Dr. Elsayegh has been treating neuromuscular patients, including those with Amyotrophic Lateral Sclerosis (ALS) and Charcot-Marie-Tooth (CMT), for over 15 years. He is an adviser on numerous boards in the fields of pulmonary medicine, critical care medicine, sleep medicine, and neuromuscular disease.
Tim Estilow, OTR/L, is an occupational therapist in the Neuromuscular Program at the Children’s Hospital of Philadelphia. Tim also serves on the Junior Committee of the Peripheral Nerve Society and as a member of the Inherited Neuropathies Consortium.
Tim’s professional aim is to establish therapeutic interventions to improve hand function and balance in people with CMT for improved quality of life. He has participated as an evaluator in clinical trials for CMT and several other neuromuscular and neurological diseases. Tim has made important contributions to the development of clinical outcome measurers for CMT, including the CMT Pediatric Scale (CMTPedS) and the CMT Infant Scale (CMTInfS). Currently, Tim is investigating the impact of CMT on hand function and balance as it relates to activities of daily living.
Shawna Feely, MS, CGC, is a board certified genetic counselor with a specialty in neurogenetics and CMT. She was previously an assistant professor at Wayne State University (WSU), where she helped to provide genetic counseling services and coordinate the WSU CMT Clinic with Dr. Michael Shy. She has now moved to the University of Iowa (UI), where she is helping to establish a Center of Excellence with Dr. Shy. She has worked closely with the CMTA in the past, speaking at Patient/Family conferences, at the CMT SAG facilitator conference, and at local support groups. She has worked with individuals and families who have CMT, and she has done research in this area, particularly involving CMT Type 2A (CMT2A). She has immensely enjoyed her work with the individuals and families that she has been able to meet in clinic over the years, along with all the wonderful people who are committed to the CMTA. She is looking forward to continuing this work at the UI and as a member of the CMTA Advisory Board.
Valery Hanks, OTR/L, C/NDT, is an occupational therapist at Pi Beta Phi Rehabilitation Institute at Vanderbilt Medical Center Bill Wilkerson Center in Nashville, Tennessee. She provides outpatient services as part of an interdisciplinary team for adolescents and adults with neurological impairments. Valery graduated from The University of Tennessee Health Sciences Center in 2000 and has focused her entire career on helping people with neurological impairments. She became involved with the CMTA Center of Excellence at Vanderbilt several years ago and was part of the CMTA Patient/Family Conference in Nashville in 2015. Valery is honored to be a part of the CMTA and thrilled to provide any assistance she can to aid in advancing the field of treatment, research and patient/family education.
An inspiring educator, speaker and author, Sarah Kesty assists the CMTA by helping our members make the best of their children’s school experiences. An experienced advocate who has CMT herself, Sarah helps families navigate school support systems with confidence and clarity.
Sarah has been working with individuals who have a wide range of disabilities for over 15 years. Graduating from Sacramento State with a master’s in special education, Sarah went on to earn two more teaching credentials. She has taught children of all ages, from kindergarten through high school, and has even coached Special Olympics. The recipient of numerous teaching grants, Sarah recently received funding to launch a social skills program and develop an executive functioning curriculum for middle school students.As a motivational speaker for groups of teachers, parents and students, Sarah speaks on disability awareness and advocacy and maximizing life satisfaction. She also writes for several publications, including The Special EDucator, a publication for California special ed teachers. Be sure to read the inspiring stories she shares on her website, www.sarahkesty.com, and her new children’s book, “Everyone Has Something!”
A former disability claim case manager, Kate Lair brings a wealth of knowledge and experience to the CMT patient community as a member of the CMTA’s Advisory Board. Diagnosed with CMT1A in infancy, Kate considers herself a “professional patient” and has learned how to adeptly navigate the health insurance bureaucracy. After graduating with a master’s in sociology, Kate went on to hold non-profit and private sector jobs in a variety of fields, including individual disability insurance and employer-sponsored long-term disability insurance. Kate lives in western Massachusetts with her husband and daughter and is excited to put her expertise to good use on behalf of her fellow CMT patients and their families!
Bethany Noelle Meloche
Bethany Meloche is the author of How Should A Body Be?, a coming-of-age story about growing up in Michigan, falling in love and learning to live with Charcot-Marie-Tooth disease. Bethany is a professional storyteller who speaks internationally on the topics of facing fears, having vision and embracing your differences. Her story has been featured in the Daily Cal, the Mercury News, Mountain View Voice, Lower Extremity Review, and Neurology Now.
Bethany worked for the Charcot-Marie-Tooth Association for five years in the roles of director of social media and director of digital strategy. She pioneered the growth of the CMTA’s online communities and remains a powerful patient advocate in her role on the Advisory Board. Raised in Ann Arbor, Bethany has a degree in nutritional science from the University of California, Berkeley, and currently lives in London, where she writes and goes for long walks with her husband.
Tom Meloche is a serial entrepreneur with a focus on starting, building and selling commercial software products and companies. His most recent book, “Ceremony: A productivity pattern language,” teaches organizations how to improve workplace interactions and increase positive emotional energy through structured rituals. Tom is also the founder and president of Meloche Consulting Inc. and WiseTise Facebook Advertising. He is the co-author of the best-selling book “Ultimate Guide to Facebook Advertising.”
David B. Misener
David B. Misener, BSc (HK), CPO, MBA, is an American board-certified prosthetist and orthotist who has been practicing in Albany, NY, since 1998. He is one of three owners of Clinical Prosthetics and Orthotics, which has office locations ranging from Saratoga Springs to Poughkeepsie, NY. Originally from Guelph, Ontario, he received his BS in human kinetics from the University of Guelph. He then went onto post-graduate work in orthotics and prosthetics at George Brown College, Toronto, Ontario.
Not only does David provide services to people with CMT, he has CMT. He was born with CMT1B as was his son Ethan. David’s maternal grandfather was the first known family member with CMT, and David assisted his family in determining the genetic source by working with the Lupski Laboratory at Baylor College of Medicine. He looks forward to contributing to the CMT Association and is excited to be part of a great team.
Elizabeth K. Misener
Elizabeth K. Misener, PhD, LMSW, loves being a part of the CMTA community as her husband and son both have CMT1B. Elizabeth and David met in high school (in Ontario, Canada) and have spent the last 33 years thriving with CMT in their lives. They settled in Upstate New York 20 years ago and have two teenage sons, one of whom has CMT1B. David was born with CMT1B, and his mother and many of his immediate family members in Canada have CMT1B.
Elizabeth has been working with clients to alleviate depression and decrease anxiety for over 18 years. She believes that when people experience severe life stressors, it is not uncommon for their lives to unravel and for them to become stuck in the pain. Her passion is listening to her clients’ stories and providing evidence-based tools to support them in their journey dealing with depression, anxiety, grief, suicidal thoughts, life transitions and everyday struggles. She has experience working with a range of individuals, including college students, seniors, and adults facing life balance issues, as well as families dealing with disabilities.
Elizabeth received her MSW from Syracuse University in 1998 and her PhD from SUNY at Albany in 2001. She has been trained in a variety of therapeutic modalities including Solution Focused, Problem Solving Therapy and approaches from the “Science of Happiness” that include enhancing mindfulness, character strengths (www.viacharacter.org), and gratitude.
James Nussbaum, PT, PhD, SCS, EMT, is the founder and director of ProHealth & Fitness, a physical and occupational therapy organization in New York. Dr. Nussbaum is also an active member of the New York State Task Force on Fall Prevention.
Inspired by personal experiences as a physical therapy patient, James became a health and fitness specialist at Johnson & Johnson and then returned to school earn his MS in physical therapy and PhD in pathokinesiology. He is now an instructor at several PT schools, including Yeshiva University where he teaches biomechanics and kinesiology.
Over the course of an expansive career, Dr. Nussbaum,has focused his clinical work and research on finding ways to enhance and document patient improvements in daily activities, mobility, balance, function and quality of life. Dr. Nussbaum has collaborated with New York City physicians, hospitals and agencies to gain IRB approval of numerous clinical trials and has presented his research around the world.
Sabrina Paganoni, MD, PhD, is an assistant professor at Harvard Medical School and works as a physician scientist at the Healey Center for ALS at Massachusetts General Hospital. Dr. Paganoni’s research focuses on therapy development for ALS. She designed and is currently leading several ALS clinical trials that include novel endpoints and biomarkers and innovative trial designs. She is the co-principal investigator for the HEALEY ALS Platform Trial.
Dr. Paganoni received her medical degree from the University of Milan, Italy, and her PhD in neuroscience from Northwestern University. She completed her residency and fellowship training in Boston in the Harvard Medical School hospital system. Dr. Paganoni has published more than70 peer-reviewed papers. Her research has been funded by the NIH, foundations, and industry. She received several awards for her work including the NIH Rehabilitation Medicine Scientist Training Program Award (2012), the American Academy of Neurology / ALS Association Three-Year Career Development Award in ALS (2017), and the American Association of Neuromuscular & Electrodiagnostic Medicine Scientific Impact Award (2019).
Glenn Pfeffer, MD, is director of the Foot and Ankle Center at Cedars-Sinai Medical Center. He is also a o-director of the Hereditary Neuropathy Program and Co-Director of the Cedars-Sinai/USC Glorya Kaufman Dance Medicine Center. Dr. Pfeffer has written numerous scientific articles on orthopaedics and has edited seven academic textbooks on the foot and ankle. He has been treating foot and ankle problems in patients with Charcot-Marie-Tooth disease for 25 years. He is a past president of the American Orthopaedic Foot and Ankle Society and recently served as president of the California Orthopaedic Association. Dr. Pfeffer is frequently interviewed on foot and ankle topics and has been featured on CNN, Dancing with the Stars, Dateline NBC, Good Morning America, and in The New York Times.
Diagnosed with CMT1B in 2014, Clark Semmes wasted no time plunging into fundraising and community development with the CMTA. Shortly after founding the Baltimore, MD CMTA Branch, Clark partnered with long-time Board Member Steve O’Donnell to transform the Swim for the Cure into the Oxford Biathlon. Now in its fourth year, the newly-renamed Funathlon brings the mid-Atlantic CMT community to the tiny town of Oxford, Maryland, for a day of fun, fellowship and delicious crab. In his spare time, Clark enjoys writing. He authored “The Tribe of the Thin Ankles,” a book about living with CMT, and is one of the contributors to the CMTA’s best-selling “101 Practical Tips for Dealing with CMT.”
Carly Siskind, MS, CGC, is a board-certified genetic counselor at Stanford University and Hospital and Lucile Packard Children’s Hospital. Specializing in CMT, she is also project manager of the Inherited Neuropathies Consortium. Before coming to Stanford, Carly worked for four years as a genetic counselor, assistant professor and CMT Clinic coordinator at Wayne State University.
Carly’s involvement with the CMTA has included speaking at patient and family conferences, writing articles for the CMTA Report, and servings as a valuable resource for any and all questions related to genetics. She also lends her invaluable expertise to us as a member of the CMTA Advisory Board.
Greg Stilwell, DPM, is a board-certified podiatrist diagnosed with CMT 1A, an inventor and a patent holder of the Hozhoni Balance Rail®. He lectures internationally on foot and ankle topics including CMT. He is fluent in both in English and Spanish. He is a published author on MRI results of calf muscle atrophy in CMT and has begun a philanthropic site called CMTHope, which will serve to fund those with CMT who need braces, shoes or orthotics and cannot afford them. Greg is dedicated to helping podiatrists in the US, as well as in Latin America, recognize CMT and become current on various diagnostic and treatment options.
David Tannenbaum, LCSW, is a psychotherapist in New York City who has been in practice for more than 30 years. David specializes in guiding others along their journey of growing emotionally and spiritually through their physical challenges. Of his personal experience with CMT, David says, “My CMT has been my greatest challenge and best teacher in life!” A dedicated supporter of the CMTA, David authors the “Ask David” column in The CMTA Report, where he answers questions about dealing with the social and emotional aspects of having CMT. To direct your questions to David, email them to firstname.lastname@example.org. David also facilitates the CMTA’s Emotional Support Group, which can be found at https://www.cmtausa.org/emotional-support-group/.
Amy Warfield, PT, DPT, is a physical therapist currently employed as an adjunct faculty member at Marymount University and the University of Maryland. She received her master’s degree in physical therapy from Ithaca College in New York and her doctorate in physical therapy from A.T. Still University in Arizona. She was certified by the American Physical Therapy Board of Specialties as a Neurologic Certified Specialist (NCS) from 2005-2015.
Amy previously practiced clinically at Medstar National Rehabilitation Hospital in Washington, DC, the Kennedy Krieger Institute in Maryland and the University of Rochester in New York. In each clinical setting, she has enjoyed working with pediatric and adult neurologic rehabilitation patients at different stages of their care.
Amy’s husband and two of her three young children have CMT Type 1A. Watching her kids and husband struggle with the everyday challenges of CMT motivates Amy to make a positive difference in understanding the optimal management of CMT across the lifespan.
Evan Zeltsar is a student at Masconomet High School in Boxford, Massachusetts and has CMT1A. Evan is a CMTA Youth Council member, four-time CMTA Camp Footprint attendee and Boston Walk4CMT Ambassador. He is an enthusiastic advocate for youth and adults and tries to show people how to “live with CMT rather than have CMT.” He looks to bring the unique perspective of the CMT youth community to the Advisory Board. In his free time, Evan enjoys skiing, playing the clarinet and saxophone in his school bands and annoying his older brother.