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The Morale Monologue
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Staying Thankful During Difficult Times
In this episode of the Morale Monologue, I discuss some of the things that I’m thankful for during 2021. This has been a tough year for many of us, but there are still numerous reasons why we should be thankful.
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SMA Expert Voices Survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_86BlzgT8ny3lGGW
NOTE: t's an open-ended survey. You can take it once and put down as many questions as you want.
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To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com -
Why You Should Schedule Your Spinraza Injections Now
In this episode of the Morale Monologue, I discuss the advantages of scheduling your 3 maintenance those injections of Spinraza for 2022. They say that the early bird catches the worm, so please watch my video and take the advice that I’m giving you to ensure that your set to go with your injections for next year.
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SMA Expert Voices Survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_86BlzgT8ny3lGGW
NOTE: It's an open-ended survey. You can take it once and put down as many questions as you want.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
Michael Explains Exciting Apitegromab Clinical Trial
In this episode of the Morale Monologue, I discuss a recent article that was published by SMA News Today, that reveals some very important information regarding Scholar Rock’s upcoming Phase 3 clinical trial.
Did you enjoy this video? What are your thoughts on this news? Share them in the comment section below or join our forums to be part of this conversation, and much more!
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SMA News Today Article: https://smanewstoday.com/news-posts/2021/11/12/phase-3-trial-apitegromab-non-ambulatory-sma-type-2-3-on-track-2021/
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SMA Expert Voices Survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_86BlzgT8ny3lGGW
NOTE: t's an open-ended survey. You can take it once and put down as many questions as you want.
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com -
I Made An Embarrassing Mistake
In this episode of the Morale Monologue, I explain a mistake that I made before going in for my recent Spinraza injection. Watch my video to learn what I did (and please don't judge me!). Trust me, it’s one that I’m embarrassed to admit, but it’s a teaching moment for all of us that are taking Spinraza injections. I hope you learn from what I did!
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
My Opinion On The Future of SMA Treatments
In this episode of the Morale Monologue, I give my opinions as to what the future may hold for us with regards to new treatments being developed by pharmaceutical companies. I discuss what we have available to us now, and I give you my opinions as to what pharmaceuticals may be focusing on in the coming years.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
Dose of DeAnn
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How Pets Can Enhance Your Life When Living With SMA
Hey everyone! Welcome to another episode of Dose of DeAnn! This episode is dedicated to our furry friends! In this video, I explain how pets can benefit the lives of anyone living with SMA.
Do you have a pet? If so, is it a service animal? How do they help you with your daily routine? Tell me all about them in the comment section below!
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For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
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What would you like to see in DeAnn’s next videos? Let us know! You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion.
Join us and let’s get talking! -
With SMA, Innovation In Assistance Technology Matters
Hey everyone! As the new year gets underway it’s a great opportunity to reflect on the past and look to the future.
In this video I do just that. While organizing at Mom’s we came across a couple items that are a blast from the past. Not only does it remind me how far we’ve come but also how innovative we were. I carry that innovative spirit with me to this day.
What kind of innovations have enhanced your life? I'd love to know about it! Be sure to share your favorite assistance technology on the comment section below!
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For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
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What would you like to see in DeAnn’s next videos? Let us know! You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion.
Join us and let’s get talking! -
2021 Recap: The Highs and Lows of 2021
Hey everyone! Welcome to my last video of the year!
Apart from everything, 2021 ended up being a great year. In this recap video you’ll see some of the highlights that include wonderful collaborations, along with highs and lows throughout the year. I couldn’t have done it without you, so thank you for your continued support. I look forward to sharing more of my life with you in 2022!
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Here’s a list of some of Dose of DeAnn’s videos from this year (and the ones you can watch in this recap):
Accessible Van Conversion Options: https://youtu.be/LYm7dJE4ZR0
31 Days of SMA: A chat with Alyssa Silva: https://youtu.be/z_wd5ORuFBw
Disability Discussion with Dan and Viola, The Ginchiest: https://youtu.be/NOEa2nEoPT4
JACO Robotic Arm denied, AGAIN! Here’s Why I Need it: https://youtu.be/KbUtrXH2Yks
Jaco Robotic Arm Reveal: https://youtu.be/9zszzPkFbTM
JACO Robotic Arm Chat: DeAnn and Kevin Share Their Experiences: https://youtu.be/xHIrkALjTbc
Disability Life Hack Drawer Pull: https://youtu.be/PhtwJ5sEHBk
Service Dog Recertification: Horton's Got Skills!: https://youtu.be/lSlPQMsxSF8
Comparing Front, Mid and Rear Wheel Drive Wheelchairs: https://youtu.be/E4eJeTta7Gs
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What would you like to see in DeAnn’s next videos? Let us know! You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion. Join us and let’s get talking! -
Jaco Short - Spraying a Spritz Bottle
Hey everyone! In this video I give you my tips and tricks for using the Jaco Robotic Arm to spray a spritz bottle. How awesome is this?
Do you have any ideas, thoughts, or things you would like me to try out with my Jaco Robotic Arm? Let me know about it!
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You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion. Join us and let’s get talking! -
SMA Treatment Update and a Caregiver Crisis
Hey everyone! Having been on Evrysdi for almost a year now, I thought you might like an update.
In this video I give you a brief synopsis of my journey so far. Unfortunately, I had to cut the video short because I need to shift my focus onto finding PCA coverage. Because of the nature of the job, the lack of compensation along with other factors, finding caregivers is getting increasingly difficult. It’s something that needs to be done though.
Do you have any ideas, thoughts, or tips on finding coverage?
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You can leave a comment below the video or head to the forums at https://smanewstoday.com/forums/ to add to the discussion. Join us and let’s get talking!
Ryan’s Robotics
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Opening Doors Using The Jaco Robotic Arm
Check out Ryan's latest video here. In this episode of Ryan’s Robotics, Ryan demonstrates how he uses his JACO robotic arm to open doors in his house. This is another example of how this device increases Ryan's independence. Hope you all enjoy!
Do you have any questions about the JACO arm or other assistive technologies?
Visit http://www.smanewstoday.com to learn more about spinal muscular atrophy. -
Mounting a Cell Phone to a Jaco Robotic Arm
In this episode of “Ryan’s Robotics”, Ryan demonstrates how he mounted his cell phone to his Jaco Robotic arm. While there are numerous mounts that people can purchase online, Ryan’s suggestions are more cost-efficient and adaptable. Check it out here!
Do you have any questions about the JACO arm? -
Becoming More Independent With the JACO Robotic Arm
In this episode of “Ryan’s Robotics,” Ryan demonstrates the three most important functions of his JACO Robotic arm. He demonstrates how this device helps him increase his independence.
Do you have any questions about the JACO arm?
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Cleaning The Jaco Robotic Arm Hand
In this episode of “Ryan’s Robotics”, Ryan demonstrates how he cleans his Jaco robotic arm, and how it’s important to make sure that you perform this maintenance on a routine basis.
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Using the JACO Robotic Arm to Make Coffee
In this video, Ryan demonstrates how he uses his JACO Robotic Arm to make coffee. It's a simple, yet powerful, example of how this device makes Ryan more independent each day.
Hope you all enjoy this video! And just a heads up, myself and the other moderators will be off tomorrow and Friday for the Thanksgiving holiday. Enjoy the rest of the week, and we'll talk to you all soon.
Do you have any questions for Ryan about the JACO arm?
