Elizabethtown College Seeks Young Adults With CMT for Survey About Social Life

Young adults living with Charcot-Marie-Tooth disease: You can help in a new study. Allison Eveler, a senior occupational therapy major at Elizabethtown College in Pennsylvania, is conducting an undergraduate research study to determine the impacts of CMT on the social participation of young adults. Allison, who herself lives with CMT, recognized a need for research . . .

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2018 ONEVoice Survey Results Gathered in a New Report

In January 2018, MDA partnered with Edge Research, an established research firm with extensive expertise working with patient advocacy organizations, to conduct an objective and thorough study among the neuromuscular disease community. This survey, a first-of-its-kind for MDA, was called ONEVoice and comprised 50 questions that sought to identify the needs of individuals and families . . .

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For Lainie Ishbia, CMT and Personal Style Aren’t Mutually Exclusive

Growing up with Charcot-Marie-Tooth disease (CMT), Lainie Ishbia learned about living with invisible disability — experiencing the daily struggle of movement without looking, outwardly and obviously, as if that’s the case. She also learned, once ankle-foot orthotics (AFOs, or braces) made her disability visible, those devices designed to help make movement easier can also make . . .

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MDA Releases New Guide for Caregivers

Today, MDA, supported by grants from VieMed Healthcare and SYNERGY HomeCare, has released the MDA Guide for Caregivers, a comprehensive resource to empower individuals living with neuromuscular disease and their caregivers. The guide provides practical advice, recommendations, tips and resources to maximize quality of life, drawing on the expertise of numerous MDA Care Center staff. . . .

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