@kevin-schaefer
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Kevin Schaefer started the topic Thoughts About Disability Pride Month in the forum Raising Awareness of SMA 2 weeks 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 1 month, 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 1 month, 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 2 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 2 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 2 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 3 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 3 months, 2 weeks 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 4 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 4 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 4 months, 3 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 4 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 4 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 5 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 5 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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Kevin Schaefer started the topic Should People With SMA Take the COVID-19 Vaccine? in the forum The SMA News Today YouTube Channel 5 months, 1 week 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 5 months, 3 weeks 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 5 months, 3 weeks 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 5 months, 3 weeks 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 5 months, 4 weeks ago
Ugh, sorry to hear this. The bureaucracy sucks. Have you tried to contact anyone from Kinova?
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