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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 0 replies, 1 voice, and was last updated 10 months, 3 weeks ago by Brianna Albers.

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      Brianna Albers
      Keymaster

      Happy Monday!

      In her latest column, Alyssa reflects on the impact of Spinraza. She’s grown used to the gains she’s seen, from improved lung function to an increase in stamina. However, her latest dose was delayed because of an insurance holdup. She noticed several changes in the weeks she was waiting for her dose, from fatigue to emotional exhaustion.

      The absence of Spinraza helped Alyssa realize just how much the medication was doing for her. The delay between doses can be frustrating, but the improvements she’s seen are well worth it. Alyssa is more determined than ever to fight against SMA through the use of Spinraza.

      If you’re currently taking Spinraza, what kind of changes have you noticed between doses?

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