Strongly

An expression of the live unlimited spirit, stories and voices of the MDA community

News, Research

UC Davis Researchers Seek DMD Participants for Survey to Improve Clinical Trial Outcome Measurements

MDA Staff

In order to develop better methods for capturing the perspective of individuals living with Duchenne muscular dystrophy (DMD) during clinical trials, researchers at the University of California Davis Neuromuscular Research Center are seeking participants for an online survey to monitor movement and daily living abilities. The Duchenne Muscular Dystrophy Life-Time Mobility Scale (DMD-LMS) is a . . .

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News

FDA Announces the Approval of TIGLUTIK, an Oral Suspension Form of riluzole, for the Treatment of ALS

MDA Staff

On September 6th, the U.S. Food and Drug Administration (FDA) announced the approval of TIGLUTIK, an oral suspension form of riluzole for the treatment of amyotrophic lateral sclerosis (ALS). TIGLUTIK, marketed by ITF Pharma, the U.S. subsidiary of Italian specialty pharmaceutical company Italfarmaco, is an oral suspension formulation of riluzole, which has been available in . . .

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News, Advocacy

Three Major Patient Advocacy Groups Focused on CMT Research to Collaborate on FDA “Voice of the Patient Report” and Patient-Focused Meeting

MDA Staff

In honor of Charcot-Marie-Tooth (CMT) Awareness Month, the Muscular Dystrophy Association joins the Charcot-Marie-Tooth Association (CMTA) and the Hereditary Neuropathy Foundation (HNF) to host an externally led patient-focused drug development (PFDD) meeting for CMT. The PFDD meeting is being held on Friday, Sept. 28 at the College Park Marriott Hotel and Conference Center in Hyattsville, . . .

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News, Living with Muscular Dystrophy

MDA, PPMD, TREAT-NMD and World Duchenne Organization Release New Duchenne Guide for Families

Robin Geiger

The first standards of care for Duchenne muscular dystrophy (DMD) were published by the U.S. Centers for Disease Control and Prevention (CDC) in 2010. And today — on World Duchenne Awareness Day 2018 — the DMD care landscape is already, and excitingly, a much different space. Several new therapies, including the first-ever disease modifying DMD . . .

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News, Research

Exploring the Latest in MDA’s CMT Research

Amanda Haidet-Phillips

The future of Charcot-Marie-Tooth research and treatments rests where the disease begins: in genes. While many new genes involved in CMT have been identified, we know as many as 40 percent of people living with CMT still don’t have a confirmed genetic diagnosis. We’re also still trying to understand the disease mechanisms of the genes . . .

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Partners, Fundraising & Events

MDA’s #RideForStrength Honors the Power of our Harley-Davidson Partnership

Lynn Vos

This year, Harley-Davidson is celebrating its 115th anniversary — and we at the Muscular Dystrophy Association are thanking them for dedicating 38 of those years to supporting our mission. Since 1980, Harley-Davidson has partnered with MDA for a single shared ideal: freedom. Freedom comes in many different forms; this can look like hitting the open . . .

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Personal Stories

Knocked Down By Disease And Depression, I Got Back Up

Chris Anselmo

Originally published in the Hartford Courant on July 22, 2018. To see the original article, click here. For many years I was consumed by worry and bitterness, thinking I was the only one who was given an unfair lot in life. My body, once athletic and fit, was weakening from the uncompromising progression of an adult-onset neuromuscular disease . . .

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