Learn about the importance of staying active and embracing exercise in our daily lives while focusing on adaptive forms of exercise, exploring unique ways to stay active, and discussing the importance of movement. All four guest speakers and our host, Laurel Richardson, director of community outreach, are CMT community members themselves.

Ashley McLeroy, MSME is the Director of Alabama’s Assisted Technology Act Program, Rehabilitation Engineer, Assistive Technology Specialist, and Disability Advocate. Ashley shares top-rated assistive technology devices for CMT’ers and helpful household gadgets.

A special fireside chat with special guests Sue Bruhn, PhD, the CMTA’s CEO, and Katherine Forsey, PhD, the CMTA’s Chief Research Officer. During this conversation, Sue and Katherine reviewed the most frequently asked questions that came in during the CMTA Patient & Research Summit.

Dr. Svaren, Dr. Herrmann, Nikolay Zhukovsky and Gilles Bouchard share a CMT 1A STAR research update to include the following: the latest information about new projects in the 1A drug development pipeline, and opportunities for patients to be involved in research.

Dr. Guido Cavaletti and Dr. Paola Alberti share updates on the newly reviewed and revised CMT Neuro-toxic Medication List. The CMTA funded a grant awarded to Guido Cavaletti, MD at the University of Milano-Bicocca to review and update the current CMT neuro-toxic medication list. Dr. Cavaletti and colleague, Dr. Paola Alberti spent months conducting an evidence-based systematic review of drugs that may be neurotoxic to people living with CMT.

Lorna Ryan shares how nutrition may support symptoms of CMT and discusses the latest research and critical questions around dietary and supplemental needs. Learn how to safely implement nutritional management strategies without strict dietary protocols for improved health outcomes living with CMT.

Christopher Klein, MD and Pitch Chompoopong, MD. Drs. Klein and Chompoopong discuss surgical outcomes for CMT/HNPP Hand Surgery and share information from a recent paper on the topic of Utility of Carpal Tunnel Release and Ulnar Decompression in CMT1A and HNPP.

Marmaduke Loke, CPO provides education and insight on the different levels of bracing, misnomers about bracing and discuss the difference between a device, brace, and a standing and walking solution. Marmaduke has specialized in CMT bracing for the past 32 years and has lectured nationally and internationally on CMT. He is a leading practitioner teaching courses to clinicians on Triplanar Alignment and Management and has developed X-ray validated Triplanar Management that corrected or prevented foot and ankle deformities associated with CMT.

Angela Vandersteen and Erin Weierbach, both of whom are CMT community members and who work and volunteer in the advocacy arena. Angela sits on the board of the Indiana Governor’s Council for People with Disabilities and brings years of experience to this conversation. Erin is a member of the Pennsylvania Community on Transition leadership team and contributes to planning and facilitating advocacy and transition related events statewide and beyond. Both speakers share their experience, knowledge and passion in this meeting.

Navigating the school system for your child with CMT can be tough and confusing. Learn effective and lower-stress ways to ensure your child’s school experience is excellent! As a former student, a veteran teacher, and now an advocate with CMT, Sarah knows what you’re going through and how to move forward. Learn about 504s and IEPs, the best accommodations to address CMT concerns, how to deal with the dreaded PE, and how you and your child can advocate across the school years.

Dr. Elsayegh and CMTA advisory board member and patient advocate Kenneth Raymond provide the patient perspective on CMT-related breathing issues and talk about the differences between CPAP, BiPAP and AVAPS machines.

CMTA board member and CMT advocate, Elizabeth Ouellette, interviewed Bethany about how she handles mental health issues that so often accompany progressive disease.

The effort to identify genes that cause rare diseases is more important than ever since effective treatments for genetically caused rare diseases are within sight. Dr. Stephan Züchner shares information about a new study called the Distant Cousin Project.

A presentation by Gary Shepard, a CMTA Branch Leader on gadgets that community members have found to be the most helpful when navigating water bottles, ATM machines, writing utensils, putting on socks, and much more.

David Tannenbaum, a psychotherapist and CMTA Advisory Board member shares strategies for navigating the emotional side of living with CMT.

Dr. Stilwell shares valuable information on how to care for CMT feet, the importance of wearing supportive orthotics and shoes, tips on dealing with cold feet, and much more.

Robert Meier, a consultant for Allard USA Bracing provides in-depth information about orthotics and AFO’s for the CMT community.

Kate Lair provides helpful information about CMT & Disability/SSDI including tips for those filing for disability benefits and ways to build a strong case.

This informal conversation among parents of kids with CMT led by CMTA parents Elizabeth Ouellette, Laurel Richardson, Jeana Sweeney and Jonah Berger covers topics including genetic testing (to test or not to test?), explaining CMT to children, managing school-related issues and finding CMT experts.

Having dedicated her entire career to people with neurological impairments, occupational therapist and CMTA Advisory Board member Valery Hanks shares a wealth of information on OT for CMT hands and also provides information on useful gadgets that help with daily tasks.

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, including CMT. Valery graduated from The University of Tennessee Health Sciences Center in 2000 and worked at the CMT Clinic at Vanderbilt under Dr. Jun Li.

Sara Kevern, a registered dietitian and nutrition support specialist at Stanford Health Care and Stanford Children’s Health, discusses how to best adjust your diet to manage CMT symptoms. Now a member of the CMTA Advisory Board, Sara joined the Stanford neuromuscular team in 2019 to inaugurate and build nutrition services, and she works as part of the multi-disciplinary clinic with both adult and pediatric CMT patients to help optimize their nutrition.

On Tuesday, February 23, 2021, CMT advocate Elizabeth Ouellette interviewed Dr. Steven Kraus from Synchronicity – a certified Full-Spectrum Hemp Oil company. They were joined by CMTA Advisory Board member Greg Stilwell, DPM, who shared his story and positive experience with Synchronicity’s products.

According to the team of scientific and medical experts at Synchronicity, its Full-Spectrum Hemp Oil contains not only CBD, but also nearly 100 phytonutrients that may improve sleep, reduce chronic pain, reduce anxiety/depression, treat acne and much more. In fact, all of Synchronicity’s products are made using sustainable methods and gentle processing methods in an effort to retain all the nutritional benefits of the whole hemp plant, including CBD.

During this educational meeting, Dr. Steven Kraus discussed the science behind this therapeutic product, while Dr. Stilwell, a tried and true Synchronicity customer, talked about his personal journey using Synchronicity’s products.

On Saturday, December 5, 2020 CMT patient advocate Elizabeth Ouellette interviewed Francois Cote and Stephane Savard, co-inventors of the TurboMed brace. The TurboMed braces control foot drop, are worn on the outside of the shoe and allow easy plantar flexion in order to keep maximal ankle range of motion and calf muscle strength. Better yet, the braces can be changed from one shoe to another in just a few minutes.

Choose from presentations by CMTA Center of Excellence neurologists Dr. Steven Scherer (UPENN/Adult Neuro) or Dr. Alexander Fay (UCSF/Peds Neuro) and in-depth STAR Research update breakout sessions by CMT type hosted by CMTA Board Chair Gilles Bouchard, who presented together with CMT researchers and gene therapy experts.

Also offered are sessions on living and managing CMT with topics on bracing, physical therapy, emotional wellness, and staying active with CMT.

VIEW RECORDED SESSIONS

CMT can be one confusing disease, starting with the name! Did someone say Country Music Television? CMTA Advisory Board member Bethany Meloche and CMT patient advocate Elizabeth Ouellette separate fact from fiction, clarifying some of the most misunderstood information on CMT.

CMTA Center of Excellence neurologist Dr. Steven Scherer (UPENN), met virtually with the Baltimore, MD CMTA Branch and gave an excellent presentation on what CMT is, how CMT is diagnosed and what disease progression typically looks like. He also took an in-depth look at the four most common types/subtypes, discussed pain management and answered questions from the community.

CMT advocate Elizabeth Ouellette interviews renowned orthopedic surgeon Dr. Glenn Pfeffer, the director of the foot and ankle surgery program at Cedars-Sinai in Los Angeles. Dr. Pfeffer has dedicated his life to CMT feet and the people who own them. Surgically correcting the CMT foot, he helps individuals of all ages walk with less discomfort and more stability. (Read the transcript and more at https://bestfoot4wardblog.com/.)

Dr. Pfeffer and his colleagues have just published an informative paper about CMT foot surgery, which includes everything you and your medical team need to know about recommended procedures for CMT feet.

How do you prepare for the upcoming school year when not even the experts know what to expect? CMT advocate and board member Elizabeth Ouellette interviews CMTA Advisory Board member Sarah Kesty to better understand what you can do now for a positive transition to the Fall 2020 school experience. Sarah will share strategies for students of all ages, including those with physical and learning abilities.

Jeana Sweeney has been involved with the CMTA for almost 20 years. A well-known supporter for people with CMT, Jeana’s worn many hats within the organization, from developing the CMTA branches, to kicking off Camp Footprint, to encouraging community fundraising.

Close friend and fellow CMT advocate Elizabeth Ouellette gets up front and personal with Jeana to understand her unbridled passion and deeper life purpose. Relentless in her efforts to spread the word of CMT, Jeana connects with others by listening empathically and leading fearlessly.

Jeana’s devotion to her daughter Rylee and to all families in the CMT community will touch your hearts and move you to action. Don’t miss this heartwarming, inspirational and uplifting conversation between two friends who share one mission: Cure CMT.

This has been an amazing year for the CMTA Youth Movement! Join National Youth Programs Manager Jonah Berger and Youth Council/Advisory Board member Evan Zeltsar as they walk you through the many branches of the CMTA Youth Program. What they are doing, how they are doing it and what you can do to be involved!

Shawna Feely is one of the most knowledgeable CMT genetic counselors on this planet. Elizabeth Ouellette will ask Shawna to answer some of the most commonly asked genetic questions regarding CMT.

Shawna Feely, MS, CGC, is a board certified genetic counselor with a specialty in neuro-genetics 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 continues helping individuals with their CMT diagnoses and working alongside Dr. Shy.

Please join CMTA board member, Elizabeth Ouellette, and her son, Yohan Bouchard, longtime CMTA supporter, volunteer and consultant, to learn about their personal experiences dealing and living with CMT for the past 27 years. Funny, heartwarming, and refreshing, Yohan will share his story of acceptance and gratitude. “The journey has been far from easy,” admits Yohan, “but with the help of friends, family and the CMTA community, I’ve found purpose and stability, despite my CMT.” Both Yohan and Elizabeth have key takeaways and survival tips for families dealing with CMT.

Inspiring educator, speaker and author Sarah Kesty helps CMTA 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 almost 20 years. After Sarah earned two teaching credentials, she graduated from Sacramento State with a master’s in special education. She has taught children of all ages, from kindergarten through high school, and has even coached Special Olympics.

As a motivational speaker for groups of teachers, parents and students, Sarah speaks on disability awareness, advocacy and maximizing life satisfaction. She also writes for several publications, including George Lucas’s Edutopia and KQED. Be sure to read the inspiring stories she shares on her website, www.sarahkesty.com, listen to her podcast and check out her children’s book, “Everyone Has Something!”

In this captivating and informational talk, CMTA Advisory Board Member Elizabeth Misener, PhD, LMSW, shares tools that help boost mental health during turbulent times, benefiting everyone who wants to feel better in these difficult times.

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.

We invite you to view this informative webinar with Ashraf Elsayegh, MD, Cedars-Sinai pulmonologist and CMTA Advisory Board member.

Dr. Elsayegh is a distinguished physician and researcher based in Los Angeles. With fifteen years of experience, Dr. Elsayegh is a foremost expert in the field of pulmonary medicine. He currently practices at Cedars-Sinai where his interest and research centers around neuromuscular disorders, specifically amyotrophic lateral sclerosis (ALS), as well as diaphragm dysfunction and disorders.

He will be talking about how CMT can affect breathing and cause sleep apnea, which exercises will help maintain respiration strength and what to do if you’re experiencing breathing issues.

A follow-up to the November research-focused webinar on STAR, this personal and educational presentation provides information about how CMT patients can become involved in the process of advancing CMT research.

The webinar opens with an interview led by CMTA Advisory Board Member Tom Meloche with our guest, Mark Larkin, the president of Vitaccess and developer of the CMT&Me App. In this interview, you’ll learn about the goals and strategy behind Vitaccess’ patient study for CMT and how to use the CMT&Me App to participate.

CMT community member Robert Thomas will also share his personal experience of participating in a recent drug trial for CMT, and we will discuss opportunities for you to partner with researchers by getting involved in focus groups, joining the CMT registry and participating in current clinical trials.

CMTA Board Chairman Gilles Bouchard spent the majority of his career as an executive at Hewlett Packard, after which he ran several companies in the San Francisco Bay Area, including Opnext and Livescribe. When his son Yohan was diagnosed with CMT, he chose to back the CMTA and its ambitious research goals. Now retired, he spends most of his days working with world-renowned scientists, clinicians, and biotech companies to advance CMT research.

Having organized the first strategic retreat in 2007 when STAR (or Strategy to Accelerate Research) was launched, Gilles provides an informative and exciting overview of what the CMTA is doing right now to advance treatments for CMT. He will share the amazing progress the CMTA has made over the past 10 years, while highlighting STAR’s current breadth of projects, breakthroughs and partnerships that will benefit the 3 million people living with CMT today.

Physiatrist Dr. Sabrina Paganoni and physical therapists Katey Burke and Amy Swartz from the Massachusetts General Hospital’s CMT Center of Excellence team up to deliver best-in-class exercise recommendations for patients with CMT!

This comprehensive webinar includes an overview of the prevailing scientific literature on the subject, recent updates from the field, practical recommendations from the experts, available resources and more.

CMTA Advisory Board Member Valery Hanks, an occupational therapist at Vanderbilt Medical Center, will describe occupational therapy and how it benefits individuals with CMT. She’ll also discuss ideas for various adaptive techniques and equipment and briefly touch on splinting to aid in hand function and driving hints.

Valery Hanks, OTR/L, C/NDT, has been a licensed occupational therapist since 2000. She received her bachelor’s degree in occupational therapy from the University of Tennessee Health Sciences Center. Valery has worked in both inpatient and outpatient rehabilitation settings over the course of her career. She has worked at the Pi Beta Phi Rehabilitation Institute at Vanderbilt since 2008. Valery has spent the last decade specializing in treatment of adults with acquired neurological impairments. She is certified in neuro-developmental treatment and the use of physical agent modalities. She has specialty training in vision and cognitive rehabilitation, as well as neurological treatment and splinting of the upper extremity.

CMTA Advisory Board Member Jonah Berger will discuss the various challenges of life with CMT, along with ways to meet and beat those challenges. He’ll give listeners mental, physical, and emotional tools to use in the fight to life with CMT and talk about CMT summer camp, teaching others about CMT, setting your mind compass, and the keys to finding the silver linings.

Jonah is 44 years old and lives in Colorado, where he runs a business called The Rhythm Within, working with kids and adults with special needs. He has CMTX and has enjoyed an interesting journey of challenge and wisdom. He is the author of He Walks Like a Cowboy, a book detailing the life and lessons of the CMT path and believes in the challenge and the wisdom that come from CMT!

Katy Eichinger and Amy Warfield, both physical therapists and members of the CMTA Advisory Board, will help you get in the mood for the holidays, walking you through a holiday gift list for people affected by CMT.

Katy Eichinger, PT, DPT, NCS, is a physical therapist in the Neuromuscular Disease Unit at the University of Rochester. She received her Master of Science degree in Physical Therapy from Springfield College in Massachusetts. She received her doctorate in physical therapy from Upstate Medical University in Syracuse, New York. She also is a Neurologic Certified Specialist (NCS) and a PhD candidate at the School of Nursing at the University of Rochester.

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.

October is National Bullying Prevention Awareness Month. How can you protect your children from bullying when you can’t go to school with them?

Sarah Kesty discusses proven strategies you and your child can use to lessen the likelihood of being bullied, to identify and address bullying school-wide, and to respond to bullying. Pick up tips to coach your child with go-to methods that stop bullies in their tracks. Learn how to address your child’s behavior if he or she bullies others. Finally, see how to adjust your and your child’s perspective to use any adversity to your advantage. Your child will be resilient and ready for the best school year yet!

Sarah, who has a master’s in special education from Sacramento State, has worked with individuals with a range of abilities for more than 10 years. She is a passionate advocate for people with disabilities and has two teaching credentials. She has experience teaching kindergarten through high school-aged students and coaching Special Olympics. Sarah has received numerous grants, most recently to launch a mentor program and create a disability-awareness and executive functioning curriculum for middle school students.

The six most-often-asked questions are:

• What will a brace do for me?
• How do I get a brace?
• How do I find an orthotist in my area?
• How does the orthotist know which brace will be best for me?
• How does a brace work?
• Will I need special shoes?

Over the past 30 years, Ken Cornell, CO, has developed a deep interest in the orthotic management of patients with CMT and he is now a nationally recognized authority on the subject. He earned his bachelor’s degree in biology at St. Anselm’s College in Manchester, New Hampshire, and completed his postgraduate work in orthotics and prosthetics at UCLA in 1980. Ken is a past president of the New England Chapter of the American Academy of Orthotists and Prosthetists. He is currently the orthotist at the CMTA Center of Excellence at MGH Boston and co-owns Cornell Orthotics and Prosthetics on Boston’s north shore.

David Misener, BSc (HK), CPO, MBA, is an American Board Certified Prosthetist and Orthotist who has been practicing in Albany, New York, since 1998. He is one of three owners of Clinical Prosthetics and Orthotics, which has office locations ranging from Saratoga Springs to Poughkeepsie, New York. Originally from Guelph, Ontario, he received his bachelor’s of science degree in human kinetics from the University of Guelph. He did 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 it, 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.

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 CMTA Branch Leader 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 CMT2A. She has enjoyed her work with the individuals and families she has met in clinic over the years, along with all the wonderful people who are committed to the CMTA.

Carly Siskind, MS, CGC, is a board-certified genetic counselor with a specialty in CMT. She is currently working at Stanford University and Hospital and at Lucile Packard Children’s Hospital. She previously worked for four years as a genetic counselor, assistant professor, and clinic coordinator in the CMT Clinic at Wayne State University. She is the project manager of the Inherited Neuropathies Consortium, part of the Rare Disease Clinical Research Network. Her involvement with the CMTA has included speaking at Patient/Family conferences, the CMTA Branch Leader Conference, writing articles for The CMTA Report, and being a resource for general genetic questions.

Kim Goodsell is a skilled amateur geneticist who has devoted the last two decades to the study of her CMT and ARVC. Eric Topol, a cardiologist and director of the Scripps Translational Science Institute, calls her the “patient from the future” for her use of digital technology and online information to solve the riddle underlying her two rare diseases. Kim will share her journey down the rabbit hole of two genetic diseases—Charcot-Marie-Tooth and the heart disorder ARVC (arrhythmogenic right ventricular cardiomyopathy). Finding herself in a hall of locked doors, Kim found the key to her way out in the world of modern molecular medicine. She developed a treatment plan that not only attenuated, but reversed, much of her disability through lifestyle changes, diet, exercise and workarounds that mask and control her symptoms. Kim’s message is simple: How each of our CMT conditions will play out will not be determined by our genes alone and not all those wandering through the Wonderland of CMT need be lost.

Invitae medical geneticist Tom Winder has been involved with the genetic diagnosis of neuromuscular disorders for 15 years. Before joining Invitae, he was co-director at Prevention Genetics, where he oversaw neuromuscular testing. His efforts there led to the availability of affordable tests for inherited muscle and nerve disorders, many of which had previously been unavailable in North America. Tom completed his medical genetics training in 2002 at the University of Iowa and is certified by the American Board of Medical Genetics and Genomics in clinical molecular genetics. He was an assistant professor in the department of pathology at the University of Iowa; he was also co-director of the university’s molecular pathology laboratory until 2007.

Download PDF: CMT-and-Genetic-Testing-Why-Is-It-Important.pdf (9978 downloads )

James Nussbaum is the Clinical and Research Director of ProHealth & Fitness PT OT, a physical and occupational therapy organization in New York.

Over the past 8 years, James’ clinical and research focus has been on the effects of innovative therapy interventions in medically complex patient populations. He has numerous ongoing IRB clinical trials, collaborating with many NYC physicians, hospitals, and agencies. James has lectured and presented his research around the world, and has a particular interest in finding ways to enhance and document patient improvements in ADLs, mobility, balance, function, and most importantly quality of life.

Greg Stilwell is a board certified podiatrist diagnosed with CMT 1A, an inventor and a patent holder of the Barefoot Orthotic. 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 funds people 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.

Katy Eichinger is a physical therapist in the Neuromuscular Disease Unit at the University of Rochester. She received her Master of Science degree in Physical Therapy from Springfield College in Massachusetts and her Doctorate in Physical Therapy from Upstate Medical University in Syracuse, New York. She also is a Neurologic Certified Specialist (NCS) and a PhD Candidate at the School of Nursing at the University of Rochester.

Amy Warfield is a physical therapist who 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 is an adjunct faculty member at the University of Maryland School of Medicine with the Department of Physical Therapy and Rehabilitation Science.

Sarah Kesty has worked with individuals with a range of disabilities for over ten years. She has a Masters in Special Education from Sacramento State and two teaching credentials. She has experience teaching Kindergarten through high school aged students and coaching Special Olympics. Sarah has spoken to groups of teachers, parents, and students about disability awareness, advocacy, and maximizing life satisfaction. Sarah writes for several publications, including The Special EDucator, a publication for California’s special educators. She shares inspiring stories on her website, www.sarahkesty.com, and has recently written a book for children. Sarah has CMT and can deeply empathize with both students and parents navigating the school support systems. She is honored to help CMTA members make the best of their children’s school experiences.

Jonah Berger lives in Colorful Colorado. He runs a business called The Rhythm Within, working with kids and adults with special needs. He has been diagnosed with CMTX and has enjoyed an interesting journey of challenge and wisdom. He is the author of He Walks Like A Cowboy, a book detailing the life and lessons of the CMT path. He is a proud member of the CMTA Advisory Board, and believes in the challenge and the wisdom that come from CMT!

Dr. Pfeffer is Director of the Foot and Ankle Center at Cedars-Sinai Medical Center. He is also a Co-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 The New York Times.

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 Bachelor of Science 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 it 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, PhD, LMSW, is a licensed master social worker with New York State. She provides coaching on a wide range of issues such as depression, stress management, anxiety, life-work balance and relationships. As a trained social worker, she supports individuals on their journey of self-discovery through self-reflection and goal setting. Among Elizabeth’s areas of specialization are helping people to improve relationships, reduce stress, encourage personal growth, enhance parenting skills, facilitate decision making, manage time, bolster motivation, clarify objectives, and develop concrete, attainable goals. She has been trained in the technique of Problem Solving Therapy, which is an evidence based short-term intervention for people struggling with depression.

Elizabeth and her husband David are the proud parents of two young boys aged 8 and 6. Her husband David was born with CMT 1B, and many of his immediate family members also have CMT 1B. Ethan, her 8-year-old, was also born with CMT 1B. She is excited to be part of the CMTA community.

Tim Estilow, OTR/L, is an Occupational Therapist at The Children’s Hospital of Philadelphia. He provides outpatient-based therapy services, interdisciplinary specialty clinic consultations/evaluations, and participates in Clinical Research. His specialty practice includes the use of splinting, dynamic movement orthosis, and aquatic therapy interventions for patients with neuromuscular disease. He has participated as an evaluator in Clinical Trials for CMT, DMD, SMA, MS and other neuromuscular/neurological diseases. He is currently an investigator in the CMT natural history study, and he contributed to the development of the CMT Pediatric Scale (CMTPedS) including the establishment of validity and reliability. His primary interests are improving hand function and balance to improve independence and quality of life for individuals with CMT.

Katy Eichinger, PT, DPT, NCS, is a physical therapist in the Neuromuscular Disease Unit at the University of Rochester. She received her Master of Science degree in Physical Therapy from Springfield College in Massachusetts. She received her Doctorate in Physical Therapy from Upstate Medical University in Syracuse, New York. She also is a Neurologic Certified Specialist (NCS).

Dr. Eichinger is involved in the clinical care of adult and pediatric patients with neuromuscular diseases. Additionally, she is part of the neuromuscular research team and is involved in natural history studies and clinical trials involving patients with Charcot-Marie-Tooth disease, myotonic dystrophy, and facioscapulohumeral dystrophy. She has been involved with clinical evaluator training and assisted in preparing the manual for the pediatric assessment for the CMT natural history study. Her interests are in outcome measures, health and wellness, and balance.

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 Bachelor of Science 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 it 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.

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 and Family conferences, at the CMT SAG facilitator conference, and at local support groups. She has worked with individuals and families who have CMT for the past 6 years, 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 new member of the CMTA Advisory Board.

Carly Siskind, MS, CGC, is a board certified genetic counselor with a specialty in CMT. She is currently working at Stanford University and Hospital and Lucile Packard Children’s Hospital. She previously worked for four years as a genetic counselor, assistant professor, and clinic coordinator at Wayne State University in the CMT Clinic. She is the project manager of the Inherited Neuropathies Consortium, part of the Rare Disease Clinical Research Network. Her involvement with the CMTA has included speaking at Patient and Family conferences, CMT SAG facilitator conference, writing articles for the CMTA Report, and being a resource for general genetics questions. She is very happy to be able to lend her expertise as a member of the Advisory Board.

Jonah Berger lives in Colorful Colorado. He runs a business called The Rhythm Within, working with kids and adults with special needs. He has been diagnosed with CMTX and has enjoyed an interesting journey of challenge and wisdom. He is the author of He Walks Like A Cowboy, a book detailing the life and lessons of the CMT path. He is a proud member of the CMTA Advisory Board, and believes in the challenge and the wisdom that come from CMT!

Sean McKale, CO, LO, is the practice manager of Midwest Orthotic and Technology Center in Chicago, IL. Sean began as an athletic trainer who decided his love of working with his hands would lead him to making furniture. Fortunately a mentor of his told him about the field of orthotics. He has worked in various clinical settings, but through his time spent at the Rehabilitation Institute of Michigan and his relationship with Dr Michael Shy, he has become increasingly passionate about helping patients with neuromuscular involvement. Sean has spoken at numerous national Orthotic and Prosthetic conferences about dynamic AFOs, CMT, unique case presentations, and the management of pediatric patients. He enjoys working with CMT patients because he knows he is really helping improve someone’s daily life.

Elizabeth K. Misener, PhD, LMSW, is a licensed master social worker with New York State. She provides coaching on a wide range of issues such as depression, stress management, anxiety, life-work balance and relationships. As a trained social worker, she supports individuals on their journey of self-discovery through self-reflection and goal setting. Among Elizabeth’s areas of specialization are helping people to improve relationships, reduce stress, encourage personal growth, enhance parenting skills, facilitate decision making, manage time, bolster motivation, clarify objectives, and develop concrete, attainable goals. She has been trained in the technique of Problem Solving Therapy, which is an evidence based short-term intervention for people struggling with depression.

Elizabeth and her husband David are the proud parents of two young boys aged 8 and 6. Her husband David was born with CMT 1B, and many of his immediate family members also have CMT 1B. Ethan, her 8 year old, was also born with CMT 1B. She is excited to be part of the CMTA community.

James Nussbaum, PT, PhD, SCS, EMT, is the Clinical and Research Director of ProHealth & Fitness PT, OT, a physical and occupational therapy organization in New York. His career was fueled by his experiences as a physical therapy patient and by working for Johnson and Johnson for a number of years as a health and fitness specialist. James returned to school and graduated from Touro College with a Masters of Science in Physical Therapy. He later earned a PhD in pathokinesiology, and then board certification as a Sports Certification Specialist. James sits on numerous clinical and academic advisory boards and is an active member of the NYS Task Force on Fall Prevention.

Michael Needleman has been practicing law in Pennsylvania and New Jersey for about nine years, and is awaiting admission to the Washington, D.C. bar. He is licensed to practice in the United States District Courts for the District of New Jersey, the Eastern District of Pennsylvania, the Western District of Pennsylvania, and the United States Court of Appeals for the Third Circuit. He has developed a sort of specialty practice in the employment discrimination area, and within that, of handling disability discrimination claims. He also concentrates his practice on insurance coverage issues. In terms of his personal involvement with CMT, there is a fairly extensive family history of CMT. In fact, both he and his brother have confirmed CMT diagnoses. His brother first starting showing signs at 11 or 12, while he was diagnosed at 22.

Dr. Michael Shy is a professor of neurology, pediatrics and neuroscience in the Department of Neurology at the University of Iowa in Iowa City. He’s been a leading researcher of CMT issues since 1990 and a member of the CMTA Scientific Advisory Board since 2001. He became its chairman in 2007. Prior to joining the University of Iowa, Dr. Shy was a professor of neurology at the School of Medicine at Wayne State University in Detroit, Michigan, where he headed up an inherited neuropathies consortium, a $6.25 million program focused on the science of inherited neuropathies.