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August 16, 2019

Jiffy Lube Launches 8th Annual ‘Muscle Up!’ Campaign for MDA Summer Camp

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Jiffy Lube has launched its 8th annual Muscle Up! campaign, which supports the Muscular Dystrophy Association’s (MDA) Summer Camp program as well as research and family services. Throughout August, ... Read more

August 14, 2019August 14, 2019

Children’s Hospital of Richmond Named Certified Duchenne Care Center by PPMD

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The Children’s Hospital of Richmond (CHoR), Virginia, has been named Parent Project Muscular Dystrophy’s (PPMD) 26th Certified Duchenne Care Center (CDCC). PPMD’s program, established in 2014, recognizes facilities with outstanding neuromuscular ... Read more

August 12, 2019August 12, 2019

Israel’s ‘Little Steps’ Helps Duchenne Boys Catch the Waves

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On a recent summer morning off the coast of Bat Yam, south of Tel Aviv, a dozen Israeli volunteers in wetsuits splashed in the sparkling blue waters of the ... Read more

August 9, 2019August 9, 2019

Vertex Enters Duchenne Therapy Market with $1B Acquisition of Exonics

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Move over, Sarepta Therapeutics, Solid Biosciences, PTC Therapeutics and Pfizer. Vertex Pharmaceuticals, which dominates the cystic fibrosis drug market, has just entered the multibillion-dollar race to find effective treatments ... Read more

August 7, 2019August 7, 2019

University of Manitoba Biomedical Students Design Wheelchair Hand Warmer for MD Patients

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Aiming to enhance patients’ lives, a team of University of Manitoba biomedical students has produced autonomous designs — including a wheelchair hand warmer for those living with muscular dystrophy ... Read more

August 5, 2019August 5, 2019

Physical Therapy Essential for Duchenne Boys if Given with Care, Expert Says

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Years ago, doctors believed that no exercise was best for boys with Duchenne muscular dystrophy (DMD). Today, DMD experts all agree: exercise extends lives. But what kind of exercise ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

August 2, 2019August 2, 2019

Independent Review Board Clears HOPE-2 Trial to Continue Testing CAP-1002 for DMD

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The ongoing Phase 2 HOPE-2 study has been cleared to continue exploring the potential of CAP-1002 therapy in boys and young men with advanced Duchenne muscular dystrophy (DMD). An ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

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Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

July 31, 2019July 31, 2019

November Ascent of Nepal’s Mt. Everest to Raise Money for Duchenne Research

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Climbing up the world’s tallest mountain isn’t for everyone. With that in mind, a small New England-based charity plans just such an adventure this November — for the third ... Read more

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