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In late March, the U.S. Department of Health and Human Services (HHS) announced a ‘dramatic restructuring’ of the Department, including reorganization of the Administration for Community Living (ACL), an agency…

Jaylin Hsu, from San Marino, California, is senior at the University of California, Los Angeles studying Molecular, Cell, & Developmental Biology. Since his freshman year, he has been involved in…

Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease…

Amyotrophic lateral sclerosis (ALS) is a rare, progressive neurodegenerative disease that leads to muscle weakness, loss of physical function, and ultimately death, often within three to five years from symptom onset.…

Dwayne Wilson is 57 years old. He is originally from Southern California and lived in Spokane, WA. for 20 years until moving back home to Irvine, Ca, in 2017. Dwayne…

Prior to the start of 2025, I began the usual and customary exercise of establishing professional and personal goals for the new year.  While I have many goals this year,…

Grace LoPiccolo, 21, of St. Louis, Missouri, was diagnosed with CMT-1A at the age of nine. She currently attends Saint Louis University majoring in Bioethics and Health Studies, and  Catholic…

Increasing socialization, cultivating meaningful relationships and friendships, and limiting isolation or loneliness in an increasingly remote world is a desire – and challenge – for many adults. Individuals living with…

In this episode of Quest Podcast, we chat with three pillars of the Duchenne muscular dystrophy community who are here with us on the 10th anniversary of PJ’s protocol. First,…

Cassidy Nilles is 35 years old and lives in Illinois. Cassidy lives with Limb Girdle muscular dystrophy (LGMD) type 2J. She lives with her daughter, Capri, and their maltipoo, Mila,…