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The Morale Monologue
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Could a Higher Spinraza Dose Benefit SMA patients?
In this episode of the Morale Monologue, I’m discussing a recent article that was published by SMA News Today, regarding the increased dosing amounts of Spinraza. Biogen Pharmaceuticals is currently conducting a phase 2/3 clinical trial, testing the safety and tolerability of a dose higher than the currently approved 12 mg. This is exciting news for those of us that are on Spinraza, and as we learn more, I’ll make sure to update you.
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SMA News Today Article: https://smanewstoday.com/news-posts/2022/06/10/treatment-higher-spinraza-dose-sma-may-be-more-effective/
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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 -
Going to the Bathroom With SMA
In this episode of the Morale Monologue, I’m discussing a bit of an embarrassing topic: going to the bathroom. For those of us with SMA, this daily activity becomes more of a challenge as we get older. I realize that this is a very sensitive topic and that it’s something not spoken about much openly, but that's all the more reason why we should address it.
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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 -
Why Staying Positive Matters
In this episode of the Morale Monologue, I explain why remaining positive, despite all of the negatives in our lives, matters. Those of us with SMA are confronted with challenges daily, but we need to remember our purpose. Our voice, knowledge, and empathy are three of the most important things we can offer. While staying positive can be a daunting task, our resilient spirit makes us who we are, and it has the power to influence others.
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com.
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What would you like to see in Michael'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. -
Be Your Own Best Advocate
In this episode of the Morale Monologue, I’m giving you a brief update regarding some of the clinical trials that I spoke about a few weeks ago, and then I’m giving you my opinion regarding your rights as a patient with SMA or a parent of a child with SMA. I’ve had quite a few questions regarding how some doctors are hesitant to write a prescription for one of the three FDA-approved treatments, and I give you my opinion on how to handle this type of situation.
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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 -
Current SMA Clinical Trials
In this episode of the Morale Monologue, I’m sharing an update on several clinical trials currently taking place. All of us in the SMA community have noticed a slowdown in the development of new treatments, but there is hope in the form of some stage 2 and stage 3 clinical trials.
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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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Practicing My Service Dog’s Skills in Public Spaces
Come with me as I travel with my service dog, Horton, to the Mall of America. It’s not just for fun though: We have a mission to accomplish. We’re scheduled for our public access recertification through the organization I received him from, Canine Companions. I show you some of Horton’s skills and the areas we need to work on. We also have some fun along the way.
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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. -
How I Manage “Disability Dilemmas”
One of the biggest challenges of having a disability is deciding if an activity is worth the effort and risk. This is what I like to call having a “disability dilemma.” In this video, I give you two examples of this kind of dilemma and walk you through my decision-making process. How do you decide if an activity is worth it?
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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. -
Using a Jaco Robotic Arm to Water My Plants
I’ve got another fun video for you! Inspired by a viewer’s request, I show you how I use my Jaco Robotic Arm to water my houseplants. I also explain what watering cans might work best and share other tips I’ve found helpful. I hope you enjoy the video!
What other Jaco-related videos would you like me to share? What would you like to see it do?
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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. -
A Chat With SMA Columnist Halsey Blocher
Today, I'm sharing the conversation I had with the super talented Halsey Blocher. We talk not only about her role as a columnist for SMA News but also about how her promotion as lead columnist keeps her busy. Halsey shares how she’s involved with her community and how the rest of us can branch out too.
To read Halsey's musings on life with SMA, click on this link (I always love her columns and can’t wait to read what she writes about next): https://smanewstoday.com/from-where-i-sit-halsey-blocher/
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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. -
Why Disability Visibility Matters
We all long to fit in, but having a disability can make that quite challenging. That’s why representation matters, or what I refer to as "disability visibility." In this video, I go into more detail on what this term means to me and why I feel it’s important.
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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.
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?
