@kevin-schaefer
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Kevin Schaefer started the topic Motivation Monday: Parenting With a Disability in the forum SMA Parents and Caregivers 6 hours, 22 minutes ago
Hey everyone! Hope you all had a great weekend.
For today’s Motivation Monday topic, check out this article from the MDA Quest magazine. The author is a woman with SMA, and a few years ago she and her husband adopted a child who also has SMA. She writes about the unique relationship she and her son have, and how others perceive it.
While t…[Read more]
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Kevin Schaefer replied to the topic I'm Kinda Scared in the forum Adults With SMA 1 day, 4 hours ago
Thanks for keeping us updated Crystal! Let us know if there’s any other way we can help.
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Kevin Schaefer replied to the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 1 day, 4 hours ago
It really is surreal. I’m curious too, since you started Spinraza before any of us, have you noticed any effects lately? What have your energy levels been like?
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Kevin Schaefer replied to the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 1 day, 7 hours ago
Totally agree. It’s like I was brought along to all of the MDA and SMA fundraisers when I was a kid, but I never thought about the research seriously benefitting people in our generation. Back when Zolgensma got FDA-approved, I wrote another column about what these advancements mean for us. Check it out here.
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Kevin Schaefer posted a new activity comment 1 day, 7 hours ago
Hey there, welcome! I’m Kevin, another one of the moderators. Like Alyssa said, let us know if you have any questions, and thanks for joining us!
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Kevin Schaefer posted a new activity comment 1 day, 7 hours ago
Hey Megan, welcome! I’m Kevin, another one of the moderators. Like Alyssa said, let us know if you have any questions, and thanks for joining us!
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Kevin Schaefer posted a new activity comment 3 days, 6 hours ago
Hey Sherry, welcome! I’m Kevin Schaefer, one of the other forum moderators, and I’m 26 with SMA Type 2. Like Alyssa said, let us know if you have any questions. Thanks for joining us!
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Kevin Schaefer started the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 3 days, 7 hours ago
Happy Friday everyone! Hope you all have had a great week.
Check out my latest column here. I wrote about existing and emerging treatments for SMA, and how surreal it all is. At times I don’t even know what to think, especially because I never gave the future of SMA much thought when I was growing up. It’s a lot of mixed emotions for me…[Read more]
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Kevin Schaefer started the topic The SMA News Today Podcast #45: Jim and Becky Berry in the forum SMA Parents and Caregivers 6 days, 10 hours ago
Hey everyone! Hope November is off to a good start for you all.
I’m proud to present the latest episode of the SMA News Today Podcast right here. This is a heavy conversation, as I talk with my friends Jim and Becky Berry, who lost their eldest son Carson last y…[Read more]
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Kevin Schaefer replied to the topic Columnist Writes About Embracing the Spirit of Halloween in the forum Adults With SMA 1 week ago
Yeah I have plenty of family members who are already in Christmas mode too. For me it’s Star Wars season lol.
And thanks!
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Kevin Schaefer started the topic Motivation Monday: Journaling in the forum Adults With SMA 1 week ago
Hey everyone! Hope you all had a great weekend!
For today’s Motivation Monday topic, I wanted to talk about keeping a journal. In high school I started to journal regularly, and it’s always been a very cathartic form of expression for me. Just writing out my thoughts helped me get through some tough times, and it made me feel good no matte…[Read more]
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Kevin Schaefer replied to the topic New Forums Moderator Here! in the forum Adults With SMA 1 week, 3 days ago
Welcome aboard! Excited to have you here, and to get your input on a wide range of subjects.
Have a great weekend everyone!
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Kevin Schaefer replied to the topic Goodbye in the forum Adults With SMA 1 week, 3 days ago
Thank you for all of your contributions here! Like DeAnn said, you’re more than welcome to participate in discussions here anytime. And I look forward to still seeing more videos from you. Take care.
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Kevin Schaefer replied to the topic Columnist Writes About Embracing the Spirit of Halloween in the forum Adults With SMA 1 week, 4 days ago
Thanks Halsey! And yes, I’m a big fan of chocolate too haha.
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Kevin Schaefer replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 5 days ago
Gotcha. Well that’s great!
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Kevin Schaefer replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 5 days ago
Kelly, that’s a great question, and it’s not something I had thought about. If it’s oral, I don’t see why it couldn’t be delivered via feeding tube. But it’s something I’ll look into. Thanks for bringing this up!
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Kevin Schaefer and
Julie L are now friends 1 week, 5 days ago
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Kevin Schaefer posted a new activity comment 1 week, 5 days ago
Hey Julie, welcome! Good to have you here. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!
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Kevin Schaefer replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 5 days ago
Rachel that’s great! Good luck on your next dose!
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Kevin Schaefer started the topic Columnist Writes About Embracing the Spirit of Halloween in the forum Adults With SMA 1 week, 5 days ago
Hey everyone! Hope you’re all having a great week so far.
Check out my latest column here. Halloween is almost here, and I get super into it. I wrote about how Halloween fosters a spirit of imagination, and how imagination is such an important tool for those of us with SMA. We thrive on our imaginations to figure out solutions to everyday…[Read more]
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