Patient/Family Conferences | Charcot-Marie-Tooth Association

Patient/Family Conferences

The Charcot-Marie-Tooth Association generally organizes one or two CMT Patient/Family Conferences per year, often in collaboration with a CMT 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.

Upcoming Patient/Family Conferences

Detroit CMTA Patient & Family Conference

April 27, 8:00 am to 2:00 pm
Detroit Marriott Southfield
27033 Northwestern Hwy
Southfield, MI 48043

The Charcot-Marie-Tooth Association (CMTA) invites you to the Detroit, MI CMTA Patient & Family Conference at the Detroit Marriott Southfield, 27033 Northwestern Highway, Southfield, MI 48043 from 8:00 am – 2:00 pm on Saturday, April 27, 2019.

A hot breakfast will be served from 8:00 am – 9:00 am. During this time you will have an opportunity to speak with CMT experts. Topics include neurology, genetics, breathing, surgery, physical therapy and much more! Registration is $40.00 (non-refundable). Seating is limited, so don’t wait to reserve your seat(s)!

Our exciting program will feature neurologist Dr. Jun Li, genetic counselor Karen Krajewski, pulmonologist Dr. Safwan Badr and orthotics specialist John Galonek. Amy Gray, CEO of the CMTA will be sharing STAR research updates, and we will have several additional speakers in the areas of physical therapy, pain management and more.  We will also have Mark Larkin presenting on the CMT&Me App research study and how you can be involved. It will be a fun and informative day. We hope you can join us!

Register Now


In addition to the conference, the CMTA will also be holding a CMTA Youth Outing! The outing will be available to CMT youth ages 10-18.

If you have questions or would like more information, please contact Laurel Richardson (laurel@cmtausa.org).


Seattle CMTeen Outing


Detroit CMTA Youth Outing

While you are learning everything you ever wanted to know about CMT at the Conference on April 27, CMT youth (ages 10-18) will have a chance to venture into Detroit and take part in a fun-filled adventure!

Highlights will include a visit to the Heidelberg Project (recycled materials art tour), Sweet Water Tavern for lunch, and tours of the Belle Island Aquarium and Bon Bon Bon Chocolates!

For all event details, visit www.cmtausa.org/detroit-youth.

Detroit 2019 Patient/Family Conference Agenda

Date
Location
Details

September 7, 2019
St. Louis, MO
Save the Date!
November 2, 2019
Atlanta, GA
Save the Date!

Previously Recorded Conference Video

Braces vs. Surgery

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

Overcoming Obstacles in Clinical Trials of CMT

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

CMT Research Updates

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

The Joys of CMT; Choosing Life on the Bright Side

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

A Step in the Right Direction

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

Diagnosing and Managing CMT

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