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The Morale Monologue
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New SMN Boosting Molecule Shows Promise as Add on Therapy
In this episode of the Morale Monologue, I discuss a new potential therapy that’s currently showing promise, which will boost the amount of SMN protein that is created from the SMN2 gene. Patients with SMA utilize the protein from their SMN2 genes, so research is being conducted on an SMN boosting molecule that can be used as an add-on therapy.
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SMA News Today article: https://smanewstoday.com/news-posts/2021/02/17/new-smn-protein-boosting-molecule-shows-promise-add-on-sma-therapy-study-patient-derived-cells/
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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 -
EXCITING NEWS Regarding Scholar Rocks Muscle Targeted Therapy
In this episode of the Morale Monologue, I discuss a recent article published by SMA News Today. Scholar Rock recently released their 6 month interim data from their TOPAZ trial, and recently, SMA News Today published another article giving further information regarding the TOPAZ trial, which is exciting news for all of us who have SMA.
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SMA News Today article: https://smanewstoday.com/news-posts/2021/01/18/scholar-rock-topaz-apitegromab-trial-top-line-data-due-june-2021/
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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 -
Dry Needling Procedure During Physical Therapy
In this episode of the Morale Monologue, I discuss a new procedure that I’m going through in physical therapy called dry needling. My physical therapists are using this procedure to help some of the twitching and spasming that’s happening in the supinator muscle in my right forearm. I’ve seen some great benefits so far with regards to this procedure, and after you watch my video, you may want to talk to your physical therapists and ask them if this procedure would be beneficial for you.
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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 -
Exciting News Regarding Biogen and Spinraza
In this episode of the Morale Monologue, I discuss Biogen Pharmaceutical’s DEVOTE clinical trial. The FDA recently gave Biogen approval to resume this trial, and the purpose of this study is to see if higher dosing amounts in Spinraza would benefit those of us that are on this treatment.
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SMA News Today Article:
https://smanewstoday.com/news-posts/2021/01/06/higher-dose-spinraza-trial-now-enrolling-part-b-after-no-safety-issues-found-in-part-a/
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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 -
Should SMA Patients Take The COVID 19 Vaccine?
In this episode of the Morale Monologue, I discuss a question that’s been floating around the SMA community for over a month. Many of you have asked the question regarding whether or not patients with SMA should take the COVID-19 vaccine. In my video, I review an article that was recently published by SMA News Today, and this article goes into great detail regarding the vaccine and the rollout schedule that was developed by the Centers for Disease Control.
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SMA News Today Article:
https://smanewstoday.com/news-posts/2020/12/04/mda-wants-neuromuscular-disease-patients-to-have-early-access-to-covid-19-vaccine/
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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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Comparing Front, Mid and Rear Wheel Drive Wheelchairs
Hey guys!
Throughout my lifetime I’ve had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In this video I show you a glimpse of all three. It also gave me the opportunity to give my nieces an experience allowing them a different perspective while still having a little fun. I think they walked away with a greater appreciation of what it’s like navigating the world in a wheelchair.
Will one of the chairs reign supreme?
You’ll have to watch the video to find out. Bonus, not only does Horton make an appearance Kitty does as well.
Let us know your thoughts about this video and don't forget to subscribe to SMA News Today!
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Join our SMA News Today forums at https://smanewstoday.com/forums/ -
Jaco Robotic Arm Denial! What's Next?
Hello everyone!
For the last 7 months I’ve been actively pursuing a Jaco Robotic Arm. Because the cost of it is beyond my reach I’m trying to get it covered through insurance. Unfortunately my primary insurance, Medicare, doesn’t cover it and my secondary insurance through MN Medicaid has denied it as a non-covered item that’s “not medically necessary.”
In this video I talk about the process. Of course I’m appealing the denial in hopes to get it covered. Fingers crossed I’ll have positive progress to report in the future.
Have you been through the process for a Jaco? How did it go? I would love to hear about it!
Share in the comments or on the SMA News Today forums at https://smanewstoday.com/forums/ -
Getting a New Wheelchair
I never dreamed my next wheelchair would come amidst a global pandemic. Despite complicating the process my wheelchair came quicker than ever. Going in I knew what I wanted. Of course I had to make compromises because what I want doesn’t exist. Not only did I switch brand, I’m giving front wheel drive a go. In this video I outline the process of getting the chair.
You get to see when it arrives, what it took to get adjusted and I’ll show you my favorite features. Although I’m not entirely thrilled with it I’m trying to have a positive outlook.
Have you been through this process recently? I’d love to hear how it went for you.
Share in the comments or on the SMA News Today forums at https://smanewstoday.com/forums/ -
I’ve Gotten The COVID-19 Vaccine
As vaccinations roll out throughout the country it can be disheartening when you’re not among the eligible recipients. Yet again it seems like there’s a whole sector of the population being overlooked. Unfortunately I don’t know how to change this, however I did figure out how to work within the limited scope to get my vaccine. In this video I talk about why I got vaccinated as well as how I qualified to get one and what it was like.
When you can’t change the process sometimes you have to look for loopholes, and that’s just what I did. Have you been able to get a vaccine?
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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 -
Disability Discussion with Dan and Viola, The Ginchiest
Rare Disease Day is a day meant to bring awareness to rare diseases and conditions. I had the opportunity to talk with Dan and Viola about the topic of disability.
They have their own YouTube channel, The Ginchiest. Their philosophy to keep it kind, be cool and be your best self is a great message. We talk about disability, relationships and life during a pandemic.
Be sure to check out their YouTube channel: https://www.youtube.com/channel/UCpfCvA6JvBdMCM6iREgdqKw
And don't forget to register to our SMA News Today forums:
https://smanewstoday.com/forums/
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?