CMTA Hosting 20th Patient/Family Conference Online on Nov. 6

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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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 managing the disease — virtually on Nov. 6.

This marks the second year in a row that the conference will be held virtually to ensure the health and safety of participants given the ongoing COVID-19 pandemic. This year, the free event will be held through an online, interactive 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 genetic progressive diseases of the peripheral nervous system, which controls movement and sensation in the limbs. It is mainly divided into “demyelinating CMT,” also known as CMT type 1 (CMT1), and “axonal CMT,” or CMT type 2 (CMT2).

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Demyelinating CMT is characterized by progressive demyelination, or the loss of myelin, which is the protective sheath around axons — nerve fibers that carry 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 across the globe and experts in the field, from clinicians and scientists to biotech partners, for a day of education and connection.

Its program includes a total of 25 speakers, 14 presentations, and one biotech roundtable that will be recorded to allow later viewing. There will be two sessions, with three distinct presentations each, running simultaneously throughout the morning.

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

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

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

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

The event will be started and closed with remarks from Amy Gray, CMTA’s CEO, and Gilles Bouchard, the chair of the association’s board.

Requests for more information about the conference should be sent to Laurel Richardson, director of community outreach, at [email protected]

Last year’s CMTA’s Patient/Family Conference covered topics such as symptoms and management of CMT in adults and children, genetic testing, physical therapy, orthotics/bracing, emotional wellness, and the importance of staying active.

STAR program updates related to experimental therapies for CMT demyelinating types 1, 4, and X and axonal type 2 were also provided.

Presentations from the 2020 virtual conference can be viewed here.