@kevin-schaefer
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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 1 week, 2 days 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 1 week, 3 days 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 1 week, 4 days 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 1 week, 5 days 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 2 weeks, 1 day 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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Kevin Schaefer posted a new activity comment 2 weeks, 1 day ago
Hey Andrew, welcome! We’re happy to have you as a part of this community. Please reach out to me, DeAnn Runge, or Alyssa Silva if you have any questions. Hope you have a great day.
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Kevin Schaefer started the topic Experiences with Telemedicine (Telehealth) in the forum The SMA News Today YouTube Channel 1 month ago
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]
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Kevin Schaefer and
Kip Troendle are now friends 1 month, 1 week ago
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Kevin Schaefer replied to the topic Motivation Monday: PPMD & Cure SMA Teen & Adult Virtual Holiday Mixer in the forum Adults With SMA 1 month, 1 week ago
Hey Kip! I just DM’d you the link.
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Kevin Schaefer started the topic Motivation Monday: PPMD & Cure SMA Teen & Adult Virtual Holiday Mixer in the forum Adults With SMA 1 month, 1 week ago
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]
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Kevin Schaefer started the topic Steps Taken for Evrysdi Approval in the forum The SMA News Today YouTube Channel 1 month, 2 weeks ago
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?
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Kevin Schaefer started the topic Motivation Monday: 2020 Holiday Plans in the forum Coronavirus (COVID-19) and SMA 1 month, 2 weeks ago
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]
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Kevin Schaefer replied to the topic New Holiday Schedule for 2021 in the forum Adults With SMA 1 month, 2 weeks ago
Love this Jim! Thanks for the encouragement.
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Kevin Schaefer started the topic Gratitude for the People Who Got Me Through This Year in the forum Adults With SMA 1 month, 3 weeks ago
Happy Thanksgiving everyone! If you don’t celebrate this holiday or aren’t in the U.S., hope you enjoy the day nonetheless.
It’s no doubt been a wild year, to say the least. In my latest column, I reflect on all that’s happened since March and express my gratitude for the people in my life. Hope you enjoy this one.
Anyone you’d like to say thanks to?
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Kevin Schaefer started the topic Podcast #70: Discussing the JACO Robotic Arm with Ron Borgschulte in the forum Flash Briefings and Podcasts 1 month, 4 weeks ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest podcast episode here. In episode 70, we talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Ro…[Read more]
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Kevin Schaefer replied to the topic X-Ray Frustrations in the forum Adults With SMA 2 months ago
Jim, I hear ya! With my Spinraza injections and weekly aquatic therapy sessions, the people there are great at transferring me. But it’s always nerve-wracking when it’s someone new. In this instance, I’m glad my Dad was with me.
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Kevin Schaefer replied to the topic X-Ray Frustrations in the forum Adults With SMA 2 months ago
Thanks, Lupa! I’ll definitely look into something like this.
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Kevin Schaefer replied to the topic X-Ray Frustrations in the forum Adults With SMA 2 months ago
I also stay in my chair whenever possible, but for some, I have to transfer. And pee jokes are welcome here lol.
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Kevin Schaefer replied to the topic Book/Movie/Spotify Recommendations for Quarantine in the forum Coronavirus (COVID-19) and SMA 2 months ago
Great picks! My favorite Studio Ghibli film is Princess Mononoke.
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Kevin Schaefer started the topic X-Ray Frustrations in the forum Adults With SMA 2 months ago
Yesterday, I had my annual urology checkup. The only part of this I dread quite a bit is the x-ray, mostly because it means I have to transfer out of my chair. I touched on this in my last column, but the transfer process is tough for me these days. It requires whoever’s transferring me to remove my JACO arm and tray, and then reattach both d…[Read more]
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