kevin-schaefer
Forum Replies Created
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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 it. I started sitting up straighter and having more flexibility than before. Definitely glad I did it, even though it was hard to see the benefits at the time.
Keep us posted!
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Love this Jim! Thanks for the encouragement.
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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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Thanks, Lupa! I’ll definitely look into something like this.
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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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Great picks! My favorite Studio Ghibli film is Princess Mononoke.
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Hi Delara, have you reached out to Cure SMA? They’re a great resource for connecting families to researchers and specialists. http://www.curesma.org
-Kevin
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I wrote a column a while back about how it’s become more difficult for me to read physical books, but I still do so as much as possible. You can read it here.
These days, I read what I can in physical form, and then I read a lot digitally. I’m currently about halfway through a Paul Simon biography, which I’m reading with an SMA friend. And Alyssa, I loved “The Pretty One” as well! I wrote about it here. Brie wrote a column on it as well.
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Hey Lupa, thanks for commenting!
While we don’t have a ton of data regarding this treatment yet, it’s promising that the FDA is showing a lot of interest in it. Plus, it works at the muscular level, and could positively impact the strength of trial participants. Hence, we wanted to emphasize that what we do know is really exciting.
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Absolutely! Feel free to message me.
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Hey Ari! Thanks for reading! Yeah, it’s been quite a year. But like you said, we’ll be able to get back out in the world one day.
Regarding my comic, it’s been in the works for quite some time. I wrote the script with a close friend of mine and a mutual friend of ours helped connect us with an artist. We considered Kickstarting it at one point, but we ended up participating in a Twitter pitch contest called PitMad. That’s how we acquired an agent. Still, there’s no one way to break in. Just make comics and tell stories.
Thanks for reaching out!
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Hey Ari! Glad you found us.
Yeah, I’m a big sci-fi and comics guru as well. Any favorite movies/books/comics?
Looking forward to getting to know you here! Please let us know if you have any questions.
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Glad it’s going well! Exhausting I’m sure but well worth it. Looking forward to hearing more about you and Horton!
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I hear ya. It’s been a very draining year. Today I was excited just to go to an eye doctor appointment lol.
That’s exciting about your nonprofit! Thankfully, there are still plenty of ways to connect with people virtually and do virtual events.
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Welcome, Nikki! We’re happy to have you here.
Our community definitely has grown in recent years. Even in my lifetime, I’ve seen more adults and families connect, both at in-person conferences and online. It’s great to see.
Let us know if you have any questions!
-Kevin
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I really liked this story. I was fortunate to have good social experiences growing up (I went to a really quirky magnet high school where “normal” was weird), but I still had my own insecurities. Like you said, being a teenager is hard for anyone. I just really admire Gabrielle’s honesty here.
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Yes you can absolutely listen on your Alexa devices! Just search for SMA News Today on the Alexa app and enable it as a skill. Let me know if you have any issues!
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Hey Robert. So they did touch on those topics, and they did state that there are risks when it comes to male infertility. Ultimately it’s an issue (along with other potential side effects) to discuss with your healthcare team, but they did address these topics. And yes, Cure SMA will post the webinar on their site.
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That’s great Patrick! Yeah, it’ll be the way we do things for a while. We have a nice yard space as well.
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Great idea Alyssa! Yeah I’ve seen places doing drive-in theaters too, which is pretty cool.
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That’s great Patrick! Yeah, I too enjoy sitting in the yard and listening to music on my phone.
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Hey Derek!
So I know that combination therapies are being discussed in the community. I don’t know what that would look like from a financial perspective, but I think it’s worth talking with your doctors about.
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Thank you Kip! Happy new year!
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Hey Kip! I just DM’d you the link.