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The Morale Monologue
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Differences Between Evrysdi and Spinraza
In this episode of the Morale monologue, I discuss the differences between Spinraza and Evrysdi (risdiplam). Since the FDA approved Evrysdi on Friday, August 7, I wanted to explain the differences between these 2 treatments. While they both work about the same with regards to the SMN2 gene, they go about it in different ways, and the differences are quite significant. By knowing the differences between these 2 treatments, you can speak to your doctors about which treatment would be best for you.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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Link to SMA News Today Article: https://smanewstoday.com/2020/08/14/evrysdi-spinraza-target-smn2-gene-but-in-different-ways/
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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 -
FAQs Regarding Evrysdi (Risdiplam)
In this episode of the Morale monologue, I discuss the frequently asked questions (FAQs) regarding Evrysdi, which is Roche/Genentech’s new treatment for SMA. These questions are floating around the SMA community, and we at SMA News Today, put this video together to not only answer these questions, but to give you the information that you’ll need to make an educated decision regarding this new treatment.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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Link to SMA News Today Article: https://smanewstoday.com/2020/08/07/faqs-about-evrysdi-risdiplam/
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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 -
GREAT NEWS - FDA APPROVES RISDIPLAM (Evrysdi)
In this episode of the Morale Monologue, I discussed the recent FDA approval of risdiplam. At approximately 1 PM CST, on Monday, August 7, 2020, the FDA announced that risdiplam, now known as Evrysdi, was approved for all types of SMA and all ages from 2 years of age and up. I go over how they made this decision, and also discussed the label that they wrote regarding the use and administration of this treatment.
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Articles from the SMA news today website:
https://smanewstoday.com/2020/08/07/fda-approves-evrysdi-risdiplam-first-oral-sma-treatment/
https://smanewstoday.com/2020/08/07/faqs-about-evrysdi-risdiplam/
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Link to my previous video: https://www.youtube.com/watch?v=8wCEpSsuuHk
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To join in on discussions regarding this and many other SMA topics, please visit:
https://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to
https://www.smanewstoday.com
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TO ALL VIEWERS: In this video, I state that Evrysdi is available to anyone over the age of 2 years old.
CORRECTION: Evrysdi has been FDA approved for adults, children, and infants 2 months of age and older with all types of spinal muscular atrophy (SMA).
Please except my apologies for this error. -
Eliminating The Swelling In My Feet And Ankles
In this episode of the Morale Monologue, I discuss the recent problems that I’ve been experiencing with regards to the swelling in my feet and ankles. Over the past 3 or 4 weeks, I’ve experienced an increased amount of swelling in both of my legs, ankles and feet. I talk about my visit to the hospital, the recommendations that the doctor made, and the procedure that my physical therapists performed on me during my last PT session. This procedure helps to push the swelling away from my feet and ankles, and helps to disperse this extra fluid to my upper extremities where my body can then eliminate this excess fluid. We filmed this procedure, and I included a portion of this video so that you can see as to how they did this procedure.
Link to my previous video: https://www.youtube.com/watch?v=XhhLNe_4wGY&t=2s
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com -
My LAST Spinraza Injection
In this episode of the Morale Monologue, I discuss what could be my very last Spinraza injection. If you watched my video that I did a few weeks ago, I told you that I have made the decision to switch from Spinraza to risdiplam, once it’s approved around the August timeframe. I also give you details on how my last Spinraza injection went, and some of the differences between this injection versus some of the others.
Link to my previous video: https://www.youtube.com/watch?v=xVvF3VBtbbc
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To join in on discussions regarding this and many other SMA topics, please visit: http://www.smanewstoday.com/forums
Are you interested in learning more about spinal muscular atrophy? If so, please login to http://www.smanewstoday.com
Dose of DeAnn
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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?