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Adding more movement or physical activity to each day is a common goal among people living with neuromuscular disease. However, muscle fatigue, weakness, and limited strength or range of motion can make increasing physical activity a challenge. The age-old conundrum of “if you don’t use it, you lose it” conflicts with the need for rest…

Discover essential gear to pack for a smooth trip when traveling with a disability, from mobility aids to adaptive equipment.

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, including writing my first fiction novel, expanding my culinary abilities and sharing my love of cooking through online videos, and continuing to have a consistent…

The first day of the 2025 MDA Clinical & Scientific Conference featured stirring opening remarks, research awards, and a keynote by the former FDA Commissioner.

For a quarter of a century, MDA’s Wings Over Wall Street has brought the ALS community together in New York City, raising millions of dollars to advance research and improve care. This year marks the 25th anniversary of the annual benefit, an evening dedicated to honoring extraordinary individuals who are driving progress in the fight…

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 studies. She is currently a Junior but ultimately plans on attending law school and pursuing a field in health and disability policy. Additionally, at Saint…

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 disabilities sometimes face additional barriers of physical accessibility and social inclusion in their pursuit of a healthy and fulfilling social life. Add to that a…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…

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, we have Brian Nicholoff whose son’s untimely passing was the catalyst for the creation of PJ’s protocol. Next is Amy Aikens whose son’s life was…

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, in a ranch-style home that they share with her parents. After spending 10 years as a cosmetologist doing hair in both Los Angeles and Illinois,…

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, we have Brian Nicholoff whose son’s untimely passing was the catalyst for the creation of PJ’s protocol. Next is Amy Aikens whose son’s life was…

In this episode of Quest Podcast, we chat with three of our MDA Ambassadors. Nora is a passionate animal advocate and lives with Selenon (SEPN1)-related myopathy (RM). Justin is a disability advocate and an Operations Manager and lives with Limb-girdle Muscular Dystrophy and K.L. is an entrepreneur, poker professional, and influencer living with Spinal Muscular…

In this Quest Podcast episode, we chat with a certified Life Coach who lives with spinal muscular atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities and helping them find personal fulfillment and develop strategies to improve their lives and reach their goals. Amber joins us to share…