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- How MOVR is Leading the Way in Harnessing the Progress in Neuromuscular Disease Research November 7, 2018Note: The article in the Journal for Clinical Studies can be found here and begins on P. 60. This is a time of great potential for those living with neuromuscular diseases (NMDs). The pace of progress in science is accelerating and transformative therapies are on the horizon. In just the last few years, the FDA has […]
- Clinical Trial Alert: Stealth BioTherapeutics Seeks Participants for a Phase 3 Mitochondrial Myopathy Trial November 7, 2018Stealth BioTherapeutics is looking for participants with primary mitochondrial myopathy (PMM) to participate in the MMPOWER-3 Phase 3 trial. This trial is designed to evaluate the efficacy and safety of daily subcutaneous injections of elamipretide, an investigational drug that associates with cardiolipin, a key structural component of the inner mitochondrial membrane, and has shown to […]
- Chef Dan Churchill Joined Team Momentum to Power Through the TCS NYC Marathon — and Empower MDA Families November 5, 2018On Sunday, Nov. 4, chef Dan Churchill crossed the finish line for MDA. The Australian-born, New York-based chef tackled 26 miles in the TCS New York City Marathon representing MDA’s Team Momentum. “This is genuinely a very big privilege and honor for me, on a personal level and giving back,” Dan says. “[The marathon] is […]
- MDA CEO Lynn O’Connor Vos Quoted on the Importance of Accountability Benchmarks for Charitable Organizations November 5, 2018When considering a donation to a charitable organization, donors might wonder whether that organization is trustworthy and will use monetary gifts in an effective way to fulfill its mission. With so many different charities requesting donations, and with recent high-profile cases of donor mismanagement and fraud, it is more important than ever for donors to […]
- For Lainie Ishbia, CMT and Personal Style Aren’t Mutually Exclusive November 2, 2018Growing up with Charcot-Marie-Tooth disease (CMT), Lainie Ishbia learned about living with invisible disability — experiencing the daily struggle of movement without looking, outwardly and obviously, as if that’s the case. She also learned, once ankle-foot orthotics (AFOs, or braces) made her disability visible, those devices designed to help make movement easier can also make […]