CMTA Plans Host of Events for Charcot-Marie-Tooth Patients, Caregivers

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by Mary Chapman |

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Several Charcot-Marie-Tooth Association (CMTA) events are planned in the coming months for Charcot-Marie-Tooth (CMT) patients and caregivers.

The organization is hosting a live Facebook webinar March 26 at 9 p.m. EDT. It will feature Kate Lair, a member of the CMTA advisory board and former claims adjudicator. The topic is “CMT and Filing for Disability.” Monitor the Facebook page for updates.

In a recent webinar, CMTA Board Chairman Gilles Bouchard shared an overview of the treatment-focused progress the organization has made over the last decade, highlighting technologies including stem cells, CRISPR, gene editing, gene therapy, biomarkers, high-throughput screening and axon regeneration. View the recorded session here.

The Detroit CMTA is hosting a Patient & Family Conference April 27 in Southfield, Michigan, from 8 a.m. to 2 p.m. EDT. The program will feature neurologist Jun Li, genetic counselor Karen Krajewski, pulmonologist Safwan Badr, orthotics specialist John Galonek, and other speakers in areas including physical therapy and pain management. CMTA Chief Executive Officer Amy Gray will share updates on the Strategy to Accelerate Research (STAR) program.

Topics will include neurology, genetics, breathing, surgery and physical therapy. Registration is $40, including breakfast. Go here for event details.

Also on April 27, Detroit CMTA is hosting a CMTA Youth Outing for Charcot-Marie-Tooth patients ages 10-18.

Other upcoming CMTA events include Camp Footprint, the only camp in the United States for youngsters with CMT. The free Aug. 12-16 event is for youths ages 10-18. Its goal is to empower young patients in a fun and adventurous environment with the courage, hope, skills and community needed to realize potential and develop strengths.

The theme of this year’s camp, at YMCA Camp Kon-O-Kwee Spencer in Fombell, Pennsylvania, is “Journey Around the World.” Because the camp is designed to build confidence and independence, parents are not permitted to attend. However, parents are able to have up to three counselors assigned to their child. The camp is accessible to the disabled. Go here to learn more and to register.

Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy, affecting roughly 1 in 2,500 people in the United States. The disorder weakens motor and sensory nerves, and affects activities such as speaking, walking, breathing, and swallowing. Symptom onset typically occurs in  early childhood or adolescence.