Patient / Family Conferences

Upcoming CMTA Patient/Family Conference November 2021

2021 CMTA PFC STD

 

Join us for the 20th Annual conference where we will bring together patients from across the globe, world class CMT clinicians, scientists, and biotech partners. Learn more about CMT and the most recent scientific breakthroughs in our CMTA-STAR research program. Hear about the latest resources in managing your CMT symptoms. Get involved and be a part of our global community that is helping accelerate research for a cure!

Please SAVE THE DATE and join us on Saturday, November 6. Registration, agenda and speaker line-up information coming soon. Stay tuned!

About CMTA Patient/Family Conferences

The Charcot-Marie-Tooth Association generally organizes two or three CMTA Patient/Family Conferences per year, often in collaboration with a CMTA Center of Excellence or multi-disciplinary CMT clinic.

These all-day conferences allow people with CMT and their families to get up-to-date information on the CMTA’s Strategy to Accelerate Research (STAR) from the scientists leading the effort to find treatments for CMT, and they also feature presentations from local clinicians and health care providers on topics such as the causes and diagnosis of CMT, physical and occupational therapy, orthotics and bracing, orthopedic surgery, genetic counseling, and more.

For those of you who haven’t been able to attend a conference, and for those who have attended and would like to watch the presentations again, the CMTA is also making video and other conference materials available so that everyone may benefit from them.

For more information about conferences, please contact Laurel Richardson, Director of Community Outreach, Laurel@cmtausa.org.

Previously Recorded Conference Video

2020 PFC Recorded Video
  • Zoom icon

    STAR Research Update (Demyelinating Types 1, 4 and X)
    presented by Gilles Bouchard, Chair, CMTA Board of Directors

    2020 PFC STAR Research Update - Demyelinating CMT Types

    “STAR Research Update (Demyelinating Types 1, 4 and X)”
    presented by Gilles Bouchard, Chair, CMTA Board of Directors

    This is an in-depth STAR research update led by CMTA Board Chair Gilles Bouchard and accompanied by CMT scientists and researchers Drs. Svaren, Kleopa, Scherer and Züchner. They share a detailed presentation about the CMTA’s STAR research program and also provide updates on the studies being done on CMT by type. To learn more about research on the demyelinating types of CMT, visit: www.cmtausa.org/our-research/for-patients-and-families/cmta-star-research-for-demyelinating-cmt/

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    STAR Research Update (Axonal Type 2 and Unknown Variants)
    presented by Gilles Bouchard, Chair, CMTA Board of Directors

    2020 PFC STAR Research Update - Axonal CMT Types

    “STAR Research Update (Axonal Type 2 and Unknown Variants)”
    presented by Gilles Bouchard, Chair, CMTA Board of Directors

    This is an in-depth STAR research update led by CMTA Board Chair Gilles Bouchard and accompanied by CMT scientists and researchers Drs. Svaren, Kleopa, Scherer and Züchner. They share a detailed presentation about the CMTA’s STAR research program and also provide updates on the studies being done on CMT by type. To learn more about research on the axonal types of CMT, visit: www.cmtausa.org/our-research/for-patients-and-families/cmta-star-research-for-axonal-cmt/

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Adult Neurology/Genetics
    presented by Dr. Steven Scherer and Tanya Bardakjian

    2020 PFC Adult Neurology/Genetics

    “Adult Neurology/Genetics”
    presented by Dr. Steven Scherer and Tanya Bardakjian

    CMTA Center of Excellence (UPENN) neurologist Dr. Steven Scherer gives an in-depth presentation on what CMT is, the diagnostic process, CMT types/subtypes, as well as possible treatment approaches for the most common types of CMT. Genetic counselor Tanya Bardakjian shares information on the genetic mutations associated with CMT, genetic testing, inheritance patterns, and much more. For more information on genetic testing, visit: www.cmtausa.org/living-with-cmt/find-help/genetic-testing

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Pediatric Neurology/Genetics
    presented by Dr. Alexander Fay and Matt Hall

    2020 PFC Pediatric Neurology/Genetics

    “Pediatric Neurology/Genetics”
    presented by Dr. Alexander Fay and Matt Hall

    CMTA Center of Excellence (UCSF) neurologist Dr. Alexander Fay gives an in-depth presentation on what CMT is, the early diagnostic process, managing CMT, and current research happening at UCSF. Genetic counselor Matt Hall shares information on the genetic mutations associated with CMT, genetic testing, inheritance patterns, and much more. For more information on genetic testing, visit: www.cmtausa.org/living-with-cmt/find-help/genetic-testing

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Fireside Chat/Get Involved
    presented by Laurel Richardson and Jeana Sweeney

    2020 PFC Fireside Chat/Get Involved

    “Fireside Chat/Get Involved”
    presented by Laurel Richardson and Jeana Sweeney

    Two CMTA staff members, Laurel Richardson/Director of Community Outreach and Jeana Sweeney/Director of Development, share great information in this session about staying connected to and getting involved with the CMTA. It’s a fun conversation among colleagues and great information is shared. To stay connected to the CMTA, be sure to sign up for eNews here: www.cmtausa.org/enews

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Physical Therapy and CMT
    presented by Stephanie Poelker

    2020 PFC Physical Therapy and CMT

    “Physical Therapy and CMT”
    presented by Stephanie Poelker

    Stephanie Poelker, a physical therapist from the CMTA Center of Excellence at Washington University, gives a presentation on physical therapy as it relates to CMT. She talks about how CMT affects CMT patients and the importance of stretching and exercise, and she shares ideas on great ways for CMT to keep moving with low impact. For more information on physical therapy, visit: www.cmtausa.org/living-with-cmt/managing-cmt/a-guide-to-physical-and-occupational-therapy-for-cmt/

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Emotional Wellness and CMT
    presented by David Tannenbaum

    2020 PFC Emotional Wellness and CMT

    “Emotional Wellness and CMT”
    presented by David Tannenbaum

    Psychotherapist and fellow CMTer David Tannenbaum discusses the importance of maintaining emotional wellness and provides coping strategies for doing so. He also talks about getting to the root of fear and anxiety that is often prevalent in a chronic illness. To join the online Emotional Support Group led by David Tannenbaum, visit: www.cmtausa.org/emotional-support-group

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Orthotics/Bracing for CMT
    presented by Ken Cornell

    2020 PFC Orthotics/Bracing for CMT

    “Orthotics/Bracing for CMT”
    presented by Ken Cornell

    Ken Cornell, an orthotist from the CMTA Center of Excellence in Boston at Mass General, shares a fantastic presentation on bracing for CMT patients. He stresses the importance of having braces that work for you and provides excellent information on the different options for bracing. To learn more about bracing, visit: www.cmtausa.org/living-with-cmt/managing-cmt/bracing

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Staying Active with CMTA
    presented by Elizabeth Ouellette

    2020 PFC  Staying Active with CMTA

    “Staying Active with CMTA”
    presented by Elizabeth Ouellette

    Patient advocate and CMTA Board Member Elizabeth Ouellette gives a great presentation on the importance of staying active with CMT. She shares many wonderful ideas and leads the participants of this session through an open discussion about what it means to be CMT active. For more information on exercise and CMT, visit: www.cmtausa.org/living-with-cmt/managing-cmt/exercise/therapies-for-inherited-neuropathies

    DOWNLOAD TRANSCRIPT

  • Zoom icon

    Youth Movement, Positivity and Purpose
    presented by Jonah Berger

    2020 PFC Youth Movement, Positivity and Purpose

    “Youth Movement, Positivity and Purpose”
    presented by Jonah Berger

    This is a fun and informative session with Jonah Berger, National Youth Programs Manger for the CMTA. Jonah shares information about Youth Programs, Camp Footprint, and living a full and purposeful life with CMT. To learn more about CMTA Youth Programs, visit: www.cmtausa.org/get-involved/cmta-youth-program

    DOWNLOAD TRANSCRIPT



Featured Video: “Braces vs. Surgery” with Dr. Glenn Pfeffer

Glenn Pfeffer, MD, is the Director of the Foot and Ankle Center at Cedars-Sinai Medical Center, Los Angeles. 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 in The New York Times.

More from the 2018 Seattle PFC…

Visit the CMTA’s YouTube channel to watch any or all of the conference videos:

Seattle PFC Playlist

Download the full agenda with presenter bios:

2018_Seattle_PFC_Agenda.pdf (364 downloads)

Featured Video: “Overcoming Obstacles in Clinical Trials of CMT” with Dr. Vera Fridman

Dr. Vera Fridman is the co-director of the CMT Center of Excellence at Massachusetts General Hospital. Dr.Fridman completed her neurology training at the University of Pennsylvania and her neuromuscular fellowship at Massachusetts General and Brigham and Women’s hospitals. She subspecializes in both neuromuscular medicine and electrophysiology, and sees patients with a variety of neuromuscular conditions. Dr. Fridman has a strong clinical and research interest in inherited neuropathies, including CMT. Following her neuromuscular training, Dr. Fridman pursued a fellowship through the Inherited Neuropathies Consortium, which allowed her to gain experience in the multi-disciplinary care of patients with hereditary nerve diseases. Since 2013, she has been working to build the CMT Center of Excellence at MGH. Her research focus has been on identifying better ways to measure clinical progression in inherited neuropathies.

More from the 2015 Boston PFC…

Visit the CMTA’s YouTube channel to watch any or all of the conference videos:

Boston PFC Playlist

Download the full agenda with presenter bios:

2015_Boston_PFC_Agenda.pdf (343 downloads)

Featured Video: “CMT Research Updates” with Dr. John Svaren

Dr. John Svaren is an Associate Professor in the Department of Comparative Biosciences at the University of Wisconsin, and he serves as Director of the Cellular and Molecular Neuroscience core at the UW Waisman Center, where his laboratory is located. Since 2000, he has focused his research program on the genetic basis of peripheral myelination and the disruptions found in peripheral neuropathies such as CMT. Dr. Svaren is working with the CMTA to lead one arm of the collaboraive STAR project, which is focused on understanding the regulation of the PMP22 gene in order to develop novel assays for drug screening at the NIH. Although his primary focus has been on CMT1A, he welcomes the opportunity to help develop and implement a multi-front strategy directed at other forms of CMT.

More from the 2015 Dallas STAR Update…

Visit the CMTA’s YouTube channel to watch any or all of the STAR Update videos:

Dallas STAR Update Playlist

Download the full agenda with presenter bios:

2015_Dallas_STAR_Update.pdf (331 downloads)

Featured Video: “The Joys of CMT; Choosing Life on the Bright Side” with Jonah Berger

Jonah Berger is 42 years old and 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.

More from the 2014 Stanford PFC…

Visit the CMTA’s YouTube channel to watch any or all of the conference videos:

Stanford PFC Playlist

Download the full agenda with presenter bios:

2014_Stanford_PFC_Agenda.pdf (321 downloads)

Featured Video: “A Step in the Right Direction” with Dr. Glenn Pfeffer

Dr. Pfeffer is the Director of the Foot and Ankle Center at Cedars-Sinai and Co-Director of the Hereditary Neuropathy Program. Dr. Pfeffer has written numerous scientific articles on orthopaedics, and he has been treating foot and ankle problems in patients with Charcot-Marie-Tooth disease for 25 years.

More from the 2014 Cedars-Sinai PFC…

Visit the CMTA’s YouTube channel to watch any or all of the conference videos:

Cedars-Sinai PFC Playlist

Download the full agenda with presenter bios:

2014_Cedars-Sinai_PFC_Agenda.pdf (319 downloads)

Featured Video: “Diagnosing and Managing CMT” with Michael E. Shy, MD

Dr. Shy is Director of the CMT Clinic and Co-Director of the Neuromuscular Program at the University of Iowa. Dr. Shy joined the University of Iowa Health Care team in 2012, moving from Wayne State University, where he developed and ran a CMT clinic for 17 years. He has published extensively on inherited disorders of the peripheral nervous system, and he is a member of the CMTA’s STAR Advisory Board.

More from the 2013 Orlando PFC…

Visit the CMTA’s YouTube channel to watch any or all of the conference videos:

Orlando PFC Playlist

Download the full agenda with presenter bios:

2013_Orlando_PFC_Agenda.pdf (335 downloads)