Knocked Down By Disease And Depression, I Got Back Up

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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From Summer Camp to Shamrocks to Team Momentum, Ches Hutchinson is All In for MDA

Ches Hutchinson began his MDA volunteer journey with a long walk.

In 2011, a coworker whose son attended the Minnesota MDA Summer Camp reached out to Ches. The camp was in need of volunteers — specifically men — and Ches’ little brother had just graduated from high school. Might he be interested, Ches’ coworker asked?

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Hope is Here: MDA Blogger Chris Anselmo Recaps Our 2018 Clinical Conference

Last week, I had the opportunity to attend the 2018 MDA Clinical Conference in Arlington, Va., to write about it from the patient’s perspective. I am always excited to attend conferences that bring together stakeholders in the neuromuscular disease community. I love meeting fellow patients, and I especially love learning about the latest scientific and . . .

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“Strength is More than Muscle”: A Mother Reflects on a Year of Grief and Growth After Son’s DMD Diagnosis

One year ago, if you would have asked me to say the words Duchenne muscular dystrophy, I couldn’t. It was too new, too fresh, too difficult of a reality to process. One year ago I fell to my knees crying and physically shaking with fear, anxiety and anger as I hung up the phone with . . .

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