The Charcot-Marie-Tooth Association (CMTA) will hold its 20th Annual Patient / Family Conference – designed to empower and connect the Charcot-Marie-Tooth community and share the latest scientific breakthroughs and resources in disease management – virtually the November 6.

This is the second year in a row that the conference has been held virtually to ensure the health and safety of attendees given the ongoing COVID-19 pandemic. This year, the free event will take place through an interactive online platform called Airmeet between 9:30 a.m. and 5 p.m. ET. Registrations can be completed here.

Charcot-Marie-Tooth (CMT) is a group of progressive genetic diseases of the peripheral nervous system, which controls movement and sensation in the limbs. It is mainly divided into “demyelinating CMT”, also called CMT type 1 (CMT1), and “axonal CMT” or CMT type 2 (CMT2).

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Demyelinating CMT is characterized by progressive demyelination, or loss of myelin, which is the protective sheath around axons, nerve fibers that transmit signals to the next nerve or muscle cell. Axonal CMT is characterized by degeneration of the nerve fibers themselves.

The conference brings together people with CMT from around the world and experts in the field, from clinicians and scientists to biotechnology partners, for a day of education and connection.

Its program includes a total of 25 speakers, 14 presentations and a biotechnology panel discussion that will be recorded for later viewing. There will be two sessions, with three separate presentations each, taking place simultaneously throughout the morning.

Morning presentations will explore the first steps after a diagnosis of CMT, the pros and cons of genetic testing, the management of disease symptoms – such as pain and breathing problems – as well as the results of foot surgery / ankle and corset options.

Afternoon presentations will focus on the most recent scientific breakthroughs from CMTA’s Research Acceleration Strategy (STAR) program, launched in 2008 to promote the development and funding of research aimed at finding treatments. effective and improve the lives of CMT patients.

Research updates will be provided for several types of CMT, including type 1 (like 1A, 1B and 1X) and type 2 (like 2A, 2E and 2F), as well as the latest advances in gene therapy for types 1, 2, and 4; and advances in hereditary neuropathy with pressure paralysis research.

New data on CMT forms associated with mutations in the SORD gene – the cause of a newly identified type of CMT – and mutations of unknown importance will also be shared.

The event will begin and end with remarks from Amy Gray, CEO of CMTA, and Gilles Bouchard, Chairman of the Association’s Board of Directors.

Requests for additional conference information should be directed to Laurel Richardson, Director of Community Outreach, at [email protected]

Last year’s CMTA patient / family conference covered topics such as symptoms and management of CMT in adults and children, genetic testing, physiotherapy, orthotics / braces, wellness emotional and the importance of staying active.

Updates from the STAR program relating to investigational therapies for CMT demyelinating types 1, 4 and X and axonal type 2 were also provided.

The presentations from the 2020 virtual conference can be viewed here.


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