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.’”
I’m getting treatments at an offsite outpatient facility at Hopkins. I was just contacted for my next maintenance dose, scheduled for May 20th. This will be exactly 16 weeks from my previous maintenance dose at the end of January. Also received orders for pre-treatment labs. In speaking with others being treated through Hopkins, I’m not aware of any delays. One person just had her 4th loading dose a few weeks ago.
So far my clinic is considering it essential, so I’m scheduled to get it next week. I’ve been on it 2 1/2 years now. They said I could delay it a month if I have concerns, but honestly I think the situation will be worse in our area by then.
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