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.’”
Great points in your column, Kevin. I actually linked it in mine that will be published on Friday.
To me, Rare Disease Day means taking the opportunity to have our voices amplified on the importance of educating others about rare diseases. It means celebrating the qualities that make us rare. And, it means honoring the community that makes us feel less alone in our rarities. Other than writing about it— here and on social media— I don’t participate in any events or anything like that.
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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