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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 1 year, 1 month ago by DeAnn R.

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      DeAnn R

      Happy Tuesday everyone!

      Check out the latest episode of Dose of DeAnn: A Glimpse Into My Life with SMA, right here. In this video, I share my thoughts on the different treatments for SMA. Some of these drugs are already available, while others are in development and in clinical trials.

      As treatments like Spinraza and Zolgensma come to the market, the face of SMA is changing day by day. As such, questions and concerns arise. These concerns include access to treatment, how SMA types are categorized, and if the standard equipment for SMA individuals is really necessary. I discuss my thoughts regarding these topics.

      What questions do you have about the state of SMA research? Are you on any active treatment?

      Please let me know your thoughts, and be sure to subscribe to the SMA News Today YouTube channel if you haven’t already.

      Thanks, and hope you all have a great week!

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