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The Morale Monologue
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Apitegromab Phase 3 Trial Planned
In this episode of the Morale Monologue, I discuss an article recently published by SMA News Today. In this article, it states that Scholar Rock will be taking their potential treatment, Apitegromab, to a phase 3 trial for non-ambulatory Type 2 and 3 SMA patients. I reviewed the highlights of this article, and I’ve also linked the entire article in the description of this video.
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SMA News Today article: https://smanewstoday.com/news-posts/2021/10/04/phase-3-trial-apitegromab-muscle-therapy-sma-launch-2021/
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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 -
Why You Should Talk to Your Doctors About Pressure Sores and Ulcers
In this episode of the Morale Monologue, I discuss pressure sores and pressure ulcers for those of us that sit in wheelchairs for the majority of our days. While I’ve had different pressure sores throughout my life, the one that I just experienced put me in the hospital for 4 days, so I wanted to share my experience with you in hopes that you can talk to your doctors and try to avoid what I went through.
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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 -
Transferring To A New Physical Therapy Clinic
In this episode of the Morale Monologue, Michael Morale gives an update with regards to his physical therapy. Recently, his physical therapy assistant, Emily, accepted a new position at an outpatient physical therapy clinic in Fort Worth Texas. Michael discussed his decision to transfer to her new clinic so that he could continue working with her, and he gives you his reasons why he made this decision.
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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 -
Pros And Cons of SMA Treatments
In this episode of the Morale Monologue, Michael Morale discusses the pros and cons of SMA treatments. Michael shares his feelings with regards to his journey regarding these treatments, and shares his perspective with you with regards to where we’ve been and where we’re going regarding our treatments.
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SMA News Today Article Written By Brianna Albers: https://smanewstoday.com/columns/2021/08/02/life-sma-full-contradictions/
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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 -
Apitegromab Awarded FAST TRACK Status By The FDA
In this episode of the Morale Monologue, Michael Morale discusses the FDA’s decision to award fast-track status to Scholar Rock’s potential treatment, apitegromab. Once Scholar Rock files the paperwork for FDA approval of apitegromab, this fast-track status will shorten the time that it takes for the FDA to make a decision. As more information becomes available, Michael will continue to update the channel. Be sure to read the article that was written by SMA News Today, and also share this information with your doctors.
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SMA News Today Article: https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/
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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
Dose of DeAnn
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Unexpected Encounters
Hi everyone! So recently mom and I went on an adventure to mark the end of Summer. We wanted to check out a nearby location that is stunning this time of year. Although we didn’t make it as far as we hoped, we had some interesting encounters along the way. What adventures have you been on?
Did anything unexpected happen? I hope you enjoy the video!
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 Robotic Arm Chat: DeAnn and Kevin Share Their Experiences
Hey everyone! It's hard to believe I've had the Jaco Robotic Arm for almost 2 months. Since I'm a newbie I thought it'd be fun talking to someone who's had it a while. Kevin Schaefer is actually the one who introduced me to it. In this video not only do we talk about the different ways we acquired the Jaco, we also discuss the benefits and drawbacks of the device. I enjoyed our conversation and hope you do as well.
Let us know if you have any questions regarding the Jaco Robotic Arm. It's fun seeing the Cyborg army expanding little by little.
Kevin's Interview with Ron Borgschulte: https://soundcloud.com/sma-news-today/70-discussing-the-jaco-robotic-arm-with-ron-borgschulte
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! -
Are SMA Treatments Effective?
Hey everyone! Welcome to another video from Dose of DeAnn!
Last week on our SMA forums (https://smanewstoday.com/forums/), I asked where you were at in your SMA treatment journey. I got a lot of responses and the answers varied between those who have been on treatment for a while and those just starting out.
One question it brought up for me is the effectiveness of the treatments.
In this video I talk about some of the factors I believe play into how effective the treatments seem. Keep in mind the treatments aim to halt or slow the progression, not reverse the damage already done. I also talk about my feelings regarding if treatment is worth it. Since football season is upon us, I use a football analogy to get my point across.
What are your thoughts regarding treatment? Do you feel they are effective? I would love to hear about it!
Comment below or head to the forums at https://smanewstoday.com/forums/ for an in depth discussion.
Treatment Options Video:
https://youtu.be/C4o5ro33lXI -
Jaco Robotic Arm Reveal
Hey everyone! I'm excited for this one. Although it took a lot of effort everything has come together and I finally have my Jaco Robotic Arm! In this video not only do I show you what the installation process is like, I also show you what I can do with it.
You’ll be able to see the moment it arrived at my doorstep (figuratively speaking of course because obviously I don’t have steps,) to the moment I wake it up out of its slumber. If you recall from a previous video I struggled with certain tasks. Those were the first things I tackled with the new arm and I show you in real time how it goes. I look forward to including the Jaco in upcoming videos.
Do you have any questions? What would you like to see?
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! -
31 Days of SMA: A chat with Alyssa Silva
Hey everyone! Since we are well into SMA Awareness Month, I had a chat with SMA columnist Alyssa Silva to go over some of the stories shared via the #31DaysOfSMA initiative. In this video we share our thoughts, and talk about all things surrounding life with SMA.
Have you been following the 31 Days of SMA campaign? Which stories do you relate to the most?
Do check out all the featured stories until now at https://bit.ly/31-Days-of-SMA-2021.
And don’t forget we have open discussions on our forums at https://smanewstoday.com/forums/ as well. 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?
