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The Morale Monologue
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Pivotal Phase 3 Trail For Scholar Rock's Apitegromab Coming Soon
In this episode of the Morale Monologue, I discuss a recent article published by SMA News Today, regarding Scholar Rock’s decision to take their new potential therapy, apitegromab to a pivotal phase 3 trial. Scholar Rock is scheduled to release more data regarding this TOPAZ trial in June of this year, and their hopes are to start this pivotal phase 3 trial before the end of this year.
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SMA News Today Article: https://smanewstoday.com/news-posts/2021/04/09/top-line-topaz-trial-data-support-apitegromab-muscle-targeted-scholar-rock-therapy/
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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 -
Scholar Rock Wins US Patent For Apitegromab
In this episode of the Morale Monologue, I discuss a recent article published by SMA News Today, regarding Scholar Rock’s approval for a US patent for their new potential therapy known as apitegromab. I review the article, and discuss the stipulations of this patent, and the stipulations that I go over should bring a lot of excitement to the SMA community.
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SMA News Today Article: https://smanewstoday.com/news-posts/2021/03/26/scholar-rock-wins-us-patent-for-apitegromab-spinal-muscular-atrophy/
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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 -
The REALITY of Spinraza and Evrysdi
In this episode of the Morale Monologue, I wanted to discuss the reality of what Spinraza and Evrysdi actually do for those of us with SMA. When we first started our Spinraza treatments, some of us were hopeful that we would gain enough muscle strength to regain some of the functions that we had lost. While some of us have regained some muscle strength and functions within our bodies, Spinraza and Evrysdi were not designed to produce muscle mass and muscle strength.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab. This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
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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 -
Making The Switch From Evrysdi Back To Spinraza
In this episode of the Morale Monologue, I discuss my choice to switch back to Spinraza after starting Evrysdi. Switching from one FDA-approved treatment to another one can be a very difficult choice to make, and when I decided to switch from Spinraza to Evrysdi, I hoped that Evrysdi would work for me, but unfortunately, it didn’t. Making the switch back to Spinraza was a choice that I had to make, and I go over my reasons for making 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 -
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
Dose of DeAnn
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Nike FlyEase Review
Hi everyone!
Initially I was excited to get my hands on the Nike Go FlyEase so I could try them out and show all of you. Unfortunately, not for lack of trying, I was unsuccessful in that endeavor. What really irritated me is Nike's marketing campaign. Because they're inspired by someone with a disability you'd think that demographic would be targeted. However, they've only been available for limited early release to select individuals active on their social media platforms. Why would I, or anyone else for that matter, be active on their social media if they’ve never made a shoe we can easily wear?
In this video I talk about how it feels like a ploy to make themselves seem like a conscientious company. Despite trying another shoe in the FlyEase line, I was thoroughly disappointed.
Tune in to see how they worked for me and where you can find the Go FlyEase if you're willing to fork out the dough.
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Nike's Website: https://www.nike.com/flyease/go-flyease?q=go%20flyease&vst=go%20flyease&redirect=true
Ebay: https://www.ebay.com/sch/i.html?_from=R40&_trksid=p2380057.m570.l1313&_nkw=Nike+go+flyease&_sacat=0
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Join our SMA News Today forums at https://smanewstoday.com/forums/ -
Accessible Van Conversion Options
Hi everyone!
The process can be overwhelming when you’re looking into an accessible vehicle. What features are right for you? In this video with the help of my friends and colleagues, I show you key points to consider. It’s nice to have options, so you can find what works best for you and your family.
If there’s anything I missed please let me know in the comments below or on the forums at https://smanewstoday.com/forums/ -
Options to Automate Lights
Hi everyone!
My goal this year is to increase my independence by automating my home. Lighting is one way to do this. All too often a light is left on and it’s difficult if not impossible to turn it off.
In this video I show you 3 ways I’ve automated my lights. I can’t describe how satisfying it is to say, “Alexa, turn on/off the lights,” and boom it’s done. No more relying on someone else or having to struggle with a tool to accomplish the task.
Do you have your home automated? If so, what do you use? If you have other solutions I’d love to hear about them as well.
Hope you enjoy the video and don't forget to subscribe to SMA News Today!
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Product Links:
Smart Bulbs - https://smile.amazon.com/Kasa-Smart-Light-Dimmable-TP-Link/dp/B07G1PH3JL/ref=sr_1_6?crid=2KBPX91T8N2EU&dchild=1&keywords=tp+link+smart+bulb&qid=1620308329&sprefix=tp+link+smart+b%2Caps%2C229&sr=8-6
Smart Plugs - https://smile.amazon.com/gp/product/B079MFTYMV/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Smart Power Strip - https://smile.amazon.com/gp/product/B083JKSSR5/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Smart Switch Starter Bundle - https://smile.amazon.com/gp/product/B07HGXMFJ3/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
Smart Switch - https://smile.amazon.com/dp/B07K3TRG6W?psc=1&ref=ppx_pop_dt_b_product_details
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Join our SMA News Today forums at https://smanewstoday.com/forums/ -
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/
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?
