Krystal

In episode 76, DeAnn and I sit down for another roundtable chat. We discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s treatment, and an upcoming career webinar series from Cure SMA.

We a…[Read more]

In this episode of the Morale Monologue, Michael discusses a question that many of us must face. Should those of us with SMA take the COVID-19 vaccine? Michael reviews an article that goes into great detail regarding the vaccine and the rollout schedule. We also published a story about the limited…[Read more]

Hey everyone, check out the latest podcast episode here.

This one was a blast to record. I talked with Alvaro Cheherlian, founder and CEO of Wrekt Svpply. He talks about how he started the company and growing up with SMA. Plus, we also chatted about…[Read more]

Hey everyone, hope you’re all having a great week!

I know this topic has come up here before but is anyone having GI issues since starting Evrysdi? It’s a common side effect of this treatment. Michael’s latest video explores this topic and gives viewers some tips.

Let us know your thoughts!

Hey everyone! Hope you all had a great weekend.

I’m excited to welcome another new columnist to SMA News Today, Sherry Toh. Sherry lives in Singapore, and she wrote a great intro piece about identity and SMA. I also love the Frozen reference in her column titl…[Read more]

Hey everyone! Hope you all had a great weekend.

Please give a warm welcome to our newest columnist here at SMA News Today -Ari Anderson! Ari is 38 with SMA Type 1, and he is also from my home state of North Carolina. Check out his introductory column here.

This Is ‘Soaring With Hope’ — Welcome Aboard!

Do y…[Read more]

Hey everyone!

Check out the latest podcast here. In this episode, I chat with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who has SMA Type II. He talks in this episode about growing up…[Read more]

Happy new year! I think we’re all relieved to put 2020 behind us and to have more hope for 2021. Did you all do anything fun for the holidays?

As we kick off this year, I wanted to ask you all if you have any feedback for us here at SMA News Today. Is there anything you’d like to see on our various platforms-main site, forums, YouTube chann…[Read more]

Hey everyone! Hope you’re all having a great week so far.

Check out Michael’s latest video here. He talks about how in spite of all the chaos and hardships of this year, one positive has been an increase in the use of telemedicine. Michael shares his experiences with telemedicine and talks abo…[Read more]

Hey everyone! Hope you all had a great weekend.

I wanted to let you all know about an upcoming virtual event for teens and adults in the community. Cure SMA is partnering with PPMD (Parent Project Muscular Dystrophy) for a virtual holiday mixer. This is a 90-minute video call for individuals ages 14 years and older living with Duchenne, Becker,…[Read more]

Hey everyone! Hope you’re all having a great week.

Check out Michael’s latest video here. He talks about the steps he took for his Evrysdi approval and shares tips for others in the SMA community.

Are you pursuing Evrysdi? Do you have any questions about the process? 

Believe it or not, we’re almost at the end of 2020, finally. It’s been a wild and tumultuous year, but we’ve made it this far.

Since this is such an unusual year, and many of us won’t be able to see family and friends in person, we have to get creative for holiday plans. There will definitely be a lot of virtual hangouts with families, but I’m…[Read more]