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Santhera Announces Publication of Long-term Idebenone Data from SYROS Study in Duchenne Muscular Dystrophy – GlobeNewswire

Posted: November 21, 2019 at 2:46 am

Pratteln, Switzerland, November19, 2019 Santhera Pharmaceuticals (SIX: SANN) announces publication of the previously reported SYROS study data in prominent peer-reviewed medical journal Neuromuscular Disorders [1], demonstrating long-term efficacy with idebenone in slowing respiratory function loss in patients with Duchenne muscular dystrophy (DMD) under routine clinical care. Continue reading

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NS Pharma to Provide Update on its Investigational Therapy Viltolarsen in Webinar – Muscular Dystrophy News

Posted: at 2:46 am

NS Pharma will share future plans for viltolarsen, its investigational exon-skipping therapy for Duchenne muscular dystrophy (DMD) in a webinar hosted byParent Project Muscular Dystrophy (PPMD) on Wednesday. The company will discuss viltolarsens mechanism of action and its current regulatory status during the one-hour webinar, which will be held Nov. Continue reading

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New Hanover County firefighters to Fill the Boot for MDA – WWAY NewsChannel 3

Posted: at 2:46 am

NEW HANOVER COUNTY, NC (WWAY) New Hanover County Fire Rescue is showing its continued support for the Muscular Dystrophy Association (MDA) as its members kick off the annual Fill the Boot fundraising campaign to raise money for those with muscular dystrophy. Continuing a 65-year tradition, dedicated firefighters from New Hanover County Fire Rescue will hit the streets with boots in hand asking pedestrians, motorists, and other passersby to make a donation to MDA on Thursday until Saturday from 8 a.m. 5 p.m Continue reading

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Expressing an Attitude of Thankfulness This Holiday – Muscular Dystrophy News

Posted: at 2:46 am

When I pray, I like to start by thanking God for all of the blessings he has bestowed on me. It reminds me of how much I have to be thankful for Continue reading

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Duchenne gene therapy trial halted after serious reaction – BioNews

Posted: at 2:46 am

18 November 2019 A gene therapytrial for Duchenne muscular dystrophy (DMD) has been halted after a patient experienced serious side effects. The clinical trial, run by the US life science company, Solid Biosciences, was put on hold by the FDA (Food and Drug Administration)after the patient had an adverse reaction in response to the experimental gene therapy, called SGT-001. Continue reading

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New York Jets: Thomas Hennessy to Support the MDA Cause – Empire Sports Media

Posted: at 2:46 am

New York Jets long snapper Thomas Hennessy may only be in the league three years, but he is quite seasoned and polished. He spent time with the Indianapolis Colts before ultimately landing with the New York Jets. Continue reading

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Let’s Stay on the Cutting Edge of Research – Muscular Dystrophy News

Posted: at 2:46 am

I cant believe its been 13 years since I started exhibiting muscle loss. A lot has happened since then. My loss is slow but steady. Continue reading

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Rep. Frey and Governor Lamont Work Together to Help the Curran Family Raise Awareness about Their Son’s Rare Disease – HamletHub

Posted: at 2:46 am

Governor Proclaims World Duchenne Awareness Day in the State of Connecticut; Second state in the country to recognize this important day. In this season of thanks, Connecticut residents Christopher and Jessica Curran today expressed gratitude to both State Representative John Frey (R-111) and Governor Lamont for working together in a bipartisan fashion to raise awareness about their sons rare disease Duchenne Muscular Dystrophy. Continue reading

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Govt to fund gene therapy research on NCDs, rare diseases – CNBCTV18

Posted: at 2:46 am

The central government has decided to support research on gene therapy in a big way to tackle Indias escalating burden of non-communicable diseases (NCDs) and inherited critical disorders such as spinal muscular atrophy (SMA), thalassemia and haemophilia. Scientific institutions and universities conducting research on genomics and its therapeutic applications will soon get a financial fillip from public coffers, under an initiative facilitated and funded by the Indian Council of Medical Research (ICMR). Gene therapy is a technique that uses genetic modifications to treat or prevent diseases. Continue reading

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