Subscribe our youtube channel here!
The Morale Monologue
-
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.
=================================
SMA News Today Article: https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com -
Answering Your Questions about SMA
In this episode of the Morale Monologue, Michael Morale answers 5 questions that were posted under some recent YouTube videos that were published on the SMA News Today YouTube channel, along with some questions that were posted on his personal YouTube channel, SMAJOURNEY51.
Do you have any other questions you would like to get answered? Let us know about it! Comment below!
=================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com -
Rare Blood Disorder, Added to Zolgensma’s Safety Label
In this episode of the Morale Monologue, I discuss a recent article published by SMA News Today, regarding a rare blood disorder that was recently discovered in patients receiving Zolgensma.
Thrombotic Microangiopathy [TMA] is a rare condition characterized by blood abnormalities. This condition was recently added to Zolgensma’s safety label, and I review the details of this article.
================================
SMA News Today Article: https://smanewstoday.com/news-posts/2021/05/10/novartis-gene-therapies-tma-zolgensma-safety-label/
=================================
To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com -
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.
================================
SMA News Today Article: https://smanewstoday.com/news-posts/2021/04/09/top-line-topaz-trial-data-support-apitegromab-muscle-targeted-scholar-rock-therapy/
=================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
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.
================================
SMA News Today Article: https://smanewstoday.com/news-posts/2021/03/26/scholar-rock-wins-us-patent-for-apitegromab-spinal-muscular-atrophy/
=================================
To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
Dose of DeAnn
-
Service Dog Recertification: Horton's Got Skills!
Hello everyone!
You know, having a service dog comes with added responsibilities! Not only do I have the usual needs to tend to like feeding and bathroom breaks, but I also have to ensure we keep up with our training.
With Horton being my third service dog, I should be a pro. I have to say though, out of the three he's been the most challenging. I'm not sure if it's the fact my physical abilities have diminished over the years, or if he's being what I refer to as a turkey butt. Regardless, there are certain requirements we have to meet to retain our service dog team status through the organization I went through, Canine Companions.
One such requirement is Public Access Recertification. Typically we meet in person at a place like the Mall of America. You might remember a video I did with Roy showing you that: https://youtu.be/mJCDbIejg1U
With Covid they aren't traveling at the moment, so recertification was done virtually. We sent in a video to Canine Companions and had a Skype call instead. In this video you'll see what the process was like.
Although we have things to work on, we passed the recertification. That doesn't mean we can just be done and we're good. Every day we have to work together to maintain our skills. We might even add something new to the mix. Any good ideas?
Let me know your thoughts over on the forums at http://smanewstoday.com/forums -
JACO Robotic Arm denied, AGAIN! Here’s Why I Need it
Hello everyone!
I have some bad news to share. My quest to acquire a Jaco Robotic Arm in 2021 has hit another roadblock. Yet again it’s been denied by my insurance. That’s two denials so far. I have to submit a second appeal.
I really thought my first appeal was strong, so I’m kind of at a loss at what else I can add.
In this video I share my daily struggles, and show you how tough my life is without a robotic arm. I’m sure many of you can relate. My hope is that it does show medical necessity, since the mere fact it will enhance my life isn’t good enough. The hoops we need to jump through are definitely frustrating. I’ll keep you posted if I hear anything.
Can you relate to my experience? Have you been successful in acquiring one?
Let me know about it in the comment section below!
===========================================================
Join our SMA News Today forums at https://smanewstoday.com/forums/ -
Unboxing Cure SMA Support Package Service Dog Style
Hello, everyone!
When you have a disability support is really important. Unfortunately sometimes as an adult it feels like support is hard to come by. Therefore I'm pleased Cure SMA provides adult support packages to teens and adults with SMA. Their most recent care package has many useful items.
In this video I'm doing an unboxing with a twist to show you what's inside.
My service dog Horton lends a paw assisting me to see what goodies we received. Below are links to two packages available while supplies last if you meet the criteria. Have you received a Cure SMA support package? I’d love to hear your thoughts on the contents.
Do you find them helpful? If Cure SMA continues lending support what would you like to see? Let me know about it in the comment section below!
===========================================================
https://secure2.convio.net/fsma/site/SSurvey;jsessionid=00000000.app262a?NONCE_TOKEN=39656322D0F07D1E55C59021A593BDAA&SURVEY_ID=7130&ACTION_REQUIRED=URI_ACTION_USER_REQUESTS
https://secure2.convio.net/fsma/site/SSurvey;jsessionid=00000000.app20116b?NONCE_TOKEN=54BA4F9718A655E29304F946DCAF42CB&SURVEY_ID=8089&ACTION_REQUIRED=URI_ACTION_USER_REQUESTS
===========================================================
Join our SMA News Today forums at https://smanewstoday.com/forums/ -
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.
===========================================================
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
===========================================================
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/
Ryan’s Robotics
-
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?
SUBSCRIBE TO OUR YOUTUBE CHANNEL SO YOU DON'T MISS ANOTHER VIDEO! -
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.
SUBSCRIBE TO OUR YOUTUBE CHANNEL SO YOU DON'T MISS ANOTHER VIDEO! -
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?
