Tag: Communication

Kids, Young Adults, Research, Living with Muscular Dystrophy

Research Study Alert: Survey for Siblings of Individuals with DMD about Disclosure and Communication within the Family

Sujatha Gurunathan

Researchers at Boston Children’s Hospital/Brandeis University are seeking unaffected siblings of boys with Duchenne Muscular Dystrophy (DMD) to participate in a survey about their perspectives on disclosure and communication within the family. The information gained from this study will be used to guide parents on how to best communicate information about DMD to their family members. . . .

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News, Research

Research Study Alert: Survey for Caregivers of Individuals with SMA about Communication Abilities

MDA Staff

Researchers at Russell Sage College are seeking parents or legal guardians of individuals with spinal muscular atrophy (SMA) to participate in a survey about the communication abilities of the affected individuals. Analysis of the current communicative behaviors used by individuals with SMA will help researchers develop communication systems that better address the needs of this population. . . .

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