@kevin-schaefer
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Kevin Schaefer started the topic Podcast 79: Ainaa Farhanah, Graphic Designer with SMA in the forum Flash Briefings and Podcasts 2 days, 1 hour ago
Hey everyone! Hope you all had a great weekend.
Check out the latest episode of the podcast here. I talked with Ainaa Farhanah about her life as a graphic designer with SMA and growing up. She also discussed topics like family life and…[Read more]
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Kevin Schaefer replied to the topic Notification emails in the forum SMA Forums Welcome Lounge 2 weeks, 6 days ago
Hi Zicari! I’ll put you in touch with our IT director. Look out for an email from me soon.
Hope you have a great day!
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Kevin Schaefer started the topic Motivation Monday: Things are Looking Up in the forum SMA Forums Welcome Lounge 1 month ago
Hey everyone! Hope you all had a great weekend.
Sorry I’ve been a little quiet here lately. My main job at this site’s parent company has kept me busy, but I enjoy reading posts and conversations here.
I wanted to share my general feelings of optimism and hope right now. With all the chaos and uncertainty we’ve all experienced in the p…[Read more]
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Kevin Schaefer replied to the topic Injection site question in the forum Spinraza 1 month, 1 week ago
Hey Mike!
I have always gotten mine through cervical injections. I’ve never had any side effects and I’ve definitely experienced benefits. I’ve written about it in my column. Here’s one from a while back. It’s an option worth at least discussing with your neuro.
Hope this helps!
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Kevin Schaefer replied to the topic Podcast 77: Jeremy Camp, SMA Parent and Advocate in the forum SMA Parents and Caregivers 1 month, 1 week ago
It’s not haha. I made a joke about that in the intro.
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Kevin Schaefer started the topic Podcast 77: Jeremy Camp, SMA Parent and Advocate in the forum SMA Parents and Caregivers 1 month, 1 week ago
Happy Wednesday!
Check out the latest podcast episode here. I talked with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, hi…[Read more]
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Kevin Schaefer started the topic Podcast 76: Discussing Treatment Updates, Vaccine Access, and Recent Columns in the forum Flash Briefings and Podcasts 1 month, 3 weeks ago
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]
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Kevin Schaefer replied to the topic Accessibility Not Worthwhile in the forum Adults With SMA 1 month, 3 weeks ago
It’s absurd (and illegal) that this still happens. The main argument you can use here is that businesses lose customers by discriminating. And like Zicari pointed out, the actual cost it takes to make these accommodations is generally quite manageable.
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Kevin Schaefer started the topic Should People With SMA Take the COVID-19 Vaccine? in the forum The SMA News Today YouTube Channel 1 month, 3 weeks ago
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]
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Kevin Schaefer started the topic Podcast 75: Alvaro Cheherlian, Entrepreneur with SMA in the forum Flash Briefings and Podcasts 2 months, 1 week ago
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]
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Kevin Schaefer started the topic GI Issues with Evrysdi in the forum The SMA News Today YouTube Channel 2 months, 1 week ago
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!
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Kevin Schaefer replied to the topic About my year-long homebound anniversary in the forum Coronavirus (COVID-19) and SMA 2 months, 1 week ago
Ugh, I feel this too, and I wrote about it for my next column as well. I’m fortunate to still be able to go to my aqua therapy appointments and see a couple of close friends, but there have been so many days in the past year when I’ve been mentally and emotionally exhausted. Just kind of taking it day by day.
Like DeAnn mentioned the other day…[Read more]
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Kevin Schaefer replied to the topic Another JACO Delay in the forum SMA Assistive Technology/Equipment 2 months, 2 weeks ago
Ugh, sorry to hear this. The bureaucracy sucks. Have you tried to contact anyone from Kinova?
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Kevin Schaefer started the topic New Columnist Writes About Journeying Into the Unknown in the forum Adults With SMA 2 months, 2 weeks ago
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]
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Kevin Schaefer started the topic Welcoming Our Newest Columnist-Ari Anderson! in the forum SMA Forums Welcome Lounge 2 months, 3 weeks ago
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.
Do y…[Read more]
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Kevin Schaefer started the topic Podcast with Tyler Dykema-Artist and Musician with SMA in the forum Flash Briefings and Podcasts 3 months, 1 week ago
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]
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Kevin Schaefer replied to the topic Happy New Year! in the forum SMA Forums Welcome Lounge 3 months, 1 week ago
Great idea! I’ll look into it.
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Kevin Schaefer started the topic Happy New Year! in the forum SMA Forums Welcome Lounge 3 months, 1 week ago
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]
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Kevin Schaefer replied to the topic Holiday Note from Moderators in the forum Adults With SMA 3 months, 1 week ago
Thank you Kip! Happy new year!
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Kevin Schaefer replied to the topic Spinal surgery recovery in the forum SMA Parents and Caregivers 3 months, 2 weeks ago
Hi Aimee! Thanks for reaching out.
I had to have spinal fusion surgery in 2005, and it’s one of the hardest things I’ve ever done. It’s intense pain, and your daughter is a champion.
The best thing you can do is keep encouraging her and supporting her as best you can. I will say from experience that despite the pain, the surgery was well worth…[Read more]
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