CMT Group Meet-up

TFRD has been organizing several social events for patients with Charcot-Marie-Tooth Disease (CMT) since 2008. This year, TFRD held its 9th CMT patient social event on July 2 at the Rare Disease Welfare Center. A total of 22 families with 46 patients attended the event. This time, the event was broadcasted live online so that those who were unable to come on that day could still join us through video streaming.

Gu Wen-Kai, a CMT patient winning the Presidential Education Award this year, also came to the event. In addition to being wheelchair-bound due to the neuromuscular effects of her disease, Wen-Kai also suffers from optic nerve degeneration. He shared with everyone how he strives to fight against his disease and pursue his education. In the afternoon, Rare Craftsmen Ms. Chan (family member of an Albert's disease patient) and Ms. Zheng (family member of a chondrodysplasia patient) guided the participants to do DIY.

Fellow patients shared their expertise in different areas of work. A patient, who is a physical education teacher, shared his professional knowledge on how to perform muscle training safely to slow down the degeneration. A patient working as a dietitian shared with the audience how to maintain health and increase physical fitness through diet. TFRD also introduced its services, such as home-based rehabilitation services, maternity care, and accessible taxi subsidies, to let everyone know more about TFRD's resources.

Translator: David Lee (Becker Muscular Dystrophy)