Help to promote our Charity Book - The Dream Stone
Help to promote our Charity Book - The Dream Stone
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What Is Nemaline Myopathy That Chief Justice Of India DY Chandrachud’s Daughters Have?
What Is Nemaline Myopathy That Chief Justice Of India DY Chandra…
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onlymyhealth.com
Maverick was born with two rare neuromuscular conditions: Nemaline Myopathy and Congenital Myasthenic Syndrome. Things like breathing, smiling—and even being held—took extraordinary strength. At just two weeks old, his family brought him to BC Children’s Hospital and found more than medical care. They found a team that stood beside them through every hospital stay, every procedure, every step. Over the years, Maverick has faced more than any kid should but even in the hardest moments, he’s met l
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FacebookBC Children's Hospital Foundation
Tahira has GNE Myopathy - a rare form of muscular dystrophy. This #RareDiseaseDay we are spotlighting her story. 🧡 She was diagnosed in early 20s after noticing changes in her movements. The reality of it all hit her hard. "This was a progressive condition -- with no cure." She shares how a WhatsApp group of just 20 people with the same condition has become a powerful source of support. 📱 Watch her inspiring story and share yours today: https://loom.ly/JS3XBGo | Muscular Dystrophy UK
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Tahira has GNE Myopathy - a rare form of muscular dystrophy. This …
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🎙️ Our latest Muscles Matter podcast is out now! We look at the impact winter has on the lives of people living with a muscle wasting condition, how hobbies and connections can help navigate these challenges, and share advice for those who find winter tough ❄️ We're joined by two great guests this episode: Morvenna, who lives with adult-onset myofibrillar myopathy and Aaron, who lives with Duchenne muscular dystrophy. The podcast is hosted by Martin Hywood, who also lives with a muscle wasting
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Woman with rare genetic muscle disorder has first Dalmatian in UK as support dog
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