Strengthened by Spinraza, Marley Robinson is Tackling College — and Planning for More

Feb. 28 is Rare Disease Day, when the collective rare disease community raises awareness of the conditions with which we live and advocates for access to new novel treatments like Spinraza, the first FDA-approved disease-modifying drug for spinal muscular atrophy (SMA), a rare neuromuscular disease that affects people like 18-year-old Marley Robinson. Spinraza is making . . .

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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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MDA/IAFF Fill the Boot Camp Inspires and Educates Firefighters for the New Fundraising Season

On March 29, fire fighters from departments throughout the northeast gathered at Mohegan Sun Casino in Connecticut for MDA’s annual Fill the Boot Camp event. The goal of the one-day gathering is to provide fire fighters with the training and information needed to have a successful Fill the Boot season and to celebrate the accomplishments . . .

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