Musculardystrophynews.com

Your DMD community: Resources and support Muscular …

WEBWhile Duchenne muscular dystrophy (DMD) is one of the most common types of this group of muscle-wasting disorders, affecting about 1 in 3,500 male births, …

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URL: https://musculardystrophynews.com/your-dmd-community-resources-and-support/

Survey Highlights Mental Health Impact on MD Families of COVID …

WEBOne big underlying issue for the families of those with Duchenne and Becker muscular dystrophies is that the pandemic has caused many patients to miss medical …

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Caregiving in DMD Has Significant Overall Impact on Health, Life

WEBResults showed that caregiving in DMD was associated with a significant overall health burden. In particular, it was found that caregiving in DMD was frequently …

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DMD Analysis Reveals Wide Disparities in Disease Prevalence

WEBThe analysis found that DMD’s prevalence ranges from 15.9 to 19.5 per 100,000 live births. But that varies widely; in the United States, 1.9 out of 100,000 have …

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I'm Sleeping Comfortably Now, Thanks to a New Mattress

WEBI’m Sleeping Comfortably Now, Thanks to a New Mattress. by Leah Leilani August 11, 2020. Most mitochondrial myopathy patients rely on sleep as therapy for …

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36,000 Babies Tested for Muscular Dystrophy in PPMD Pilot in …

WEBThe Newborn Screening Pilot program run in New York by Parent Project Muscular Dystrophy (PMDD) is now complete, having screened more than 36,000 …

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Diet and Nutrition Muscular Dystrophy News

WEBMuscular dystrophy is the name given to a group of genetic disorders characterized by muscle weakness and wasting.. There is currently no cure for muscular dystrophy, but …

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Hospital Is First in Michigan to Win PPMD Certification for

WEBLocated in Grand Rapids, the hospital has become the first in the state to receive a certification from Parent Project Muscular Dystrophy (PPMD).. HDVCH is …

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The Effects of Guilt on My Body and Mind

WEBGuilt is often centered around fear, anxiety, depression, sadness, and possibly even anger. Unfortunately, in addition to altering one’s emotional well-being, …

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UK Panel Expands Care Guidelines for Adults With DMD

WEBThe guidelines were outlined in a report, “ Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular …

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How I've Outlived My Life Expectancy With Duchenne MD

WEBI Outlived My Life Expectancy by Focusing on Health and Purpose. by Hawken Miller January 10, 2022. Making it to 25 years old is no small feat. It means …

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FDA Giving SRP-9001, DMD Gene Therapy, Priority Review

WEBAn FDA decision is expected on or before May 29, 2023. “We are delighted to announce that the FDA has accepted Sarepta’s [application] for SRP-9001 for filing …

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Causes of Myotonic Dystrophy Type 2 (DM2)

WEBMyotonic dystrophy (DM) is the most common late-developing form of muscular dystrophy. (Duchenne is the most common type of MD overall.) There are two types of myotonic …

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Sarepta plans to seek expanded Elevidys approval after EMBARK

WEBElevidys (previously called SRP-9001) is designed to deliver to muscle cells a gene that encodes for a shortened but functional version of the dystrophin protein called …

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Sarepta limits US enrollment into Phase 3 DMD trial of SRP-9001

WEBENVISION (NCT05881408), launching this month, will test how safe SRP-9001 is and how well it works in ambulatory and non-ambulatory boys and men with …

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Goals Can Simplify Our Complicated Lives Muscular Dystrophy …

WEBMake sure they are concrete and realistic. Business leaders emphasize the importance of SMART — specific, measurable, attainable, relevant, and time-based — …

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MD and Your Heart Monitor: 6 Things I Wish I'd Known

WEB1. Use lotion to remove adhesive. Lotion is the easiest way to remove the adhesive on your skin left from the stickers that connect to the electrodes. It is also the …

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PPMD’s Duchenne Newborn Screening Pilot Program in NY Tests …

WEBParent Project Muscular Dystrophy, with health experts and industry partners, opened a two-year Duchenne newborn screening pilot program in New York.

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Sexuality Muscular Dystrophy News

WEBMuscular dystrophy is a group of genetic conditions characterized by muscle wasting which results in progressive loss of muscle function.. Mobility problems due to muscle …

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PPMD Launches Duchenne MD Newborn Screening Pilot Program …

WEBClick here to read about PPMD's $5 million, two-year pilot program to screen newborns in New York state for Duchenne muscular dystrophy.

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Parents as caregivers

WEBThis topic has 1 reply, 2 voices, and was last updated 3 years, 11 months ago by Danielle “Dani” Liptak.

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