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  • Cure SMA Community Webinar on Evrysdi

    Posted by kevin-schaefer on August 18, 2020 at 7:00 am

    Hey everyone! Hope you all had a great weekend.

    I just wanted to let you all know that Cure SMA is hosting a webinar about Evrysdi today at 1:00pm EST. It’ll focus on questions regarding this treatment and general information. You can find out more info and register here.

    Also, our news team is doing a series of stories focused on Evrysdi, which you can read here.

    What are your questions regarding this new treatment?

    deann-r replied 3 years, 10 months ago 4 Members · 4 Replies
  • 4 Replies
  • robert-stump

    August 18, 2020 at 2:23 pm

    I wasn’t able to join in today, I hope to catch it when it is posted on demand.  My questions include potential long term issues we don’t know much about (retina damage), specific details on specific drugs/foods we need to avoid when on Evrysdi, and please give us some clarity on male infertility.

  • kevin-schaefer

    August 18, 2020 at 4:06 pm

    Hey Robert. So they did touch on those topics, and they did state that there are risks when it comes to male infertility. Ultimately it’s an issue (along with other potential side effects) to discuss with your healthcare team, but they did address these topics. And yes, Cure SMA will post the webinar on their site.

  • lupa-f

    August 19, 2020 at 2:18 am

    I think it’d be amazing if Evrydsi made me infertile but otherwise still functional. I know it’s not a nice opinion, but I think it’s pretty irresponsible for people with SMA to have biological children (not that they can’t be parents). We know how SMA is usually passed on and knowingly possibly giving SMA to another person, especially your own child, seems really cruel to me. There’s going to be a significant problem eventually with more and more people with SMA being able to have children, even if it’s more treatable. It’s pretty much only been kept to its fairly low numbers because so many that have SMA never have children.

    The retina stuff seems pretty concerning since it wasn’t reversible and was experienced by all the monkeys that were tested. But the no-effect dose is the same as what human adults are supposed to receive so maybe it’s not an issue. My eyes already aren’t great (and my family has eye trouble history) so this is one that I think is making me want to wait a while before switching to see if it comes up more often.

  • deann-r

    August 19, 2020 at 9:15 am

    Lupa, I respect your opinion, and I myself am never having biological children. Many with SMA do have or want biological children though. Their children would not necessarily have SMA. Unless their partner was a carrier the children would not have SMA. There’s genetic testing available to find out. However their children would be carriers. So many people are carriers that don’t know. By having an SMA parent they automatically know they’re a carrier and their partner should be tested. If their partner is a carrier and they still want children there are ways around that as well.

    The retina aspect concerns me as well, especially long term. That’s the only place I lucked out in the gene pool, so I wouldn’t want to mess that up.

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