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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 4 replies, 5 voices, and was last updated 3 months, 2 weeks ago by DeAnn R.

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    Posts
    • #23176
      Jim Schneider
      Participant

      I’m curious if people have been able to receive their Spinraza injections with the Covid-19 issues.  I also would like to know if anyone just started in the last month?

    • #23177
      Alyssa Silva
      Keymaster

      Hi Jim. My Spinraza dose for this month has been postponed indefinitely. I know one of our forum members, Dennis Turner, is getting his loading doses and just went last week. Hopefully he sees this.

    • #23179
      Mike Huddleston
      Participant

      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.

    • #23182
      Dennis Turner
      Participant

      Yup, i am still getting mine,and so far right on time. My next dose is my final loading dose and is the first week in May.
      Fingers crossed!

    • #23187
      DeAnn R
      Keymaster

      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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