@kevin-schaefer
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Kevin Schaefer replied to the topic Starting the Search for New Caregivers in the forum SMA Parents and Caregivers 2 days, 19 hours ago
Thanks for sharing Pamela! It is indeed a challenge most of us here have to face. Just gotta take it one step at a time.
And I’d love to have you on the podcast! I’ll message you in a bit.
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Kevin Schaefer started the topic Starting the Search for New Caregivers in the forum SMA Parents and Caregivers 2 days, 22 hours ago
Some of you may know this, but my longtime caregiver is leaving to start a new career. I wrote a column about this recently. Obviously, this is a big transition, but I feel like I’m in a good mental state. I’ve started contacting agencies and individuals, and I sent a job ad to a CNA program in my area. I’ll of course miss Randy, but we’re both…[Read more]
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Kevin Schaefer started the topic Discussing SMA Pride and Disability Language in the forum Raising Awareness of SMA 2 months, 1 week ago
Hey everyone! Hope you’re all doing well.
Check out my latest column here. I don’t know if you all have seen, but there are discussions and debates going on in the SMA community about what to refer to this month as. While August is traditionally referred to as SMA Awareness Month, some prefer to rebrand it as SMA Pride Month. I explain thi…[Read more]
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Kevin Schaefer replied to the topic National Novel Writing Month in the forum Adults With SMA 2 months, 2 weeks ago
Nice!
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Kevin Schaefer replied to the topic National Novel Writing Month in the forum Adults With SMA 2 months, 2 weeks ago
Hey Blake! I have attempted NaNoWriMo before. It’s a great challenge and a really cool community. Brie here does it as well.
What kind of stories do you write? I mostly write comic scripts.
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Kevin Schaefer started the topic Thoughts About Disability Pride Month in the forum Raising Awareness of SMA 3 months, 1 week ago
Hey everyone, hope you’re all doing well!
July is recognized as Disability Pride Month, as it coincides with the anniversary of the Americans with Disabilities Act of 1990. I’ve written about this topic before in my column. I recently did an Instagram post about this, and I wanted to share it here.
“July is Disability Pride Month, so I’m…[Read more]
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Kevin Schaefer started the topic Podcast 83: Conversation with Magic Wheelchair Executives in the forum Flash Briefings and Podcasts 4 months, 1 week ago
Hey everyone! Hope you’re all doing well.
Check out the latest podcast episode here. I chatted with my friends Scottie and Christine from Magic Wheelchair. Give it a listen and let me know what you think. Thanks!
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Kevin Schaefer replied to the topic Virtual SMA Conference in the forum Raising Awareness of SMA 4 months, 2 weeks ago
I’ll be at the adult social tonight! You can still register here: https://annualsmaconference.configio.com/pd/13/?code=4g1Htmi1FX
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Kevin Schaefer replied to the topic Pregnancy and SMA in the forum Adults With SMA 5 months, 2 weeks ago
DaLiza, congrats! Fantastic news.
I can imagine it is overwhelming, but as stated above, there are plenty of successful parents with SMA and other disabilities. As DeAnn noted, I highly recommend her interview with Jennifer and Jennifer’s YouTube channel. I’ve met many other parents with SMA as well at conferences. There are definitely r…[Read more]
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Kevin Schaefer started the topic Podcast 81 -Interview with Chaz Hayden, SMA Writer and Youtuber in the forum Flash Briefings and Podcasts 5 months, 2 weeks ago
Hey everyone! Hope you all had a great weekend.
Check out the latest podcast episode here. I talked with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a…[Read more]
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Kevin Schaefer posted a new activity comment 5 months, 3 weeks ago
Hey DaLiza! Thanks for joining. Please let us know if you have any questions.
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Kevin Schaefer started the topic Podcast 80: Apitegromab Updates and Recent Columns in the forum Flash Briefings and Podcasts 6 months ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest podcast episode here. Me, Michael, and DeAnn discussed updates on Apitegromab, forum topics, and some recent columns. I’ve included links below.
Hope you enjoy l…[Read more]
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Kevin Schaefer started the topic Podcast 79: Ainaa Farhanah, Graphic Designer with SMA in the forum Flash Briefings and Podcasts 6 months, 1 week 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 7 months 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 7 months, 1 week 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 7 months, 2 weeks 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 7 months, 3 weeks 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 7 months, 3 weeks 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 8 months, 1 week 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 8 months, 1 week 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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