Is Covid-19 stopping your Spinraza treatments?

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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- April 21, 2020 at 5:31 pm #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?
- April 21, 2020 at 5:55 pm #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.
- April 21, 2020 at 6:12 pm #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.
- April 22, 2020 at 5:49 am #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!
- April 22, 2020 at 8:46 am #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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