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
NJ/NYC CMTA Patient/Family Conference
June 16, 8:00 am to 1:30 pm
DoubleTree by Hilton Fort Lee – George Washington Bridge
Fort Lee, NJ 07024
The CMTA is pleased to announce a Patient/Family Conference at the DoubleTree by Hilton Fort Lee on Saturday, June 16, 2018.
Our exciting program will feature neurologists Dr. David Herrmann from the Rochester, NY CMTA Center of Excellence and Dr. Louis Weimer from Columbia University.
Amy Gray, the CMTA’s CEO, will be there as well to deliver exciting updates on CMT research! And you will have the opportunity to hear from other prominent researchers, clinicians and specialists in the CMT field.
Registration is $35 per person, non-refundable. Seating is limited, so don’t wait until the last second to reserve your space(s).
In addition to the conference, the CMTA will also be holding a CMTeen Youth Outing! The outing will be available to CMTeens ages 10-18.
If you have questions or would like more information, please contact Jeana Sweeney (firstname.lastname@example.org).
NJ & NYC CMTeen Outing
On June 16, CMTeens (10 to 18) will have a chance to venture into the Big Apple for a day on the city! Highlights of our fun-filled adventure will include a trip to the Central Park Zoo, an authentic New York pizza lunch, the ultimate arcade experience of pinball through the ages, and a trip to the largest unique candy store in the world! For all event details, visit www.cmtausa.org/njnycteen.
Previously Recorded Conference Video
Featured Video: “Overcoming Obstacles in Clinical Trials of CMT” with Dr. Vera Fridman, MD
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.
Featured Video: “CMT Research Updates” with Dr. John Svaren, PhD
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.
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.
Featured Video: “A Step in the Right Direction” with Glenn Pfeffer, MD
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.
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.