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The Morale Monologue
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The Morale Monologue #17 - Working On My Balance Exercises During Workout HARD WORK BUT FUN
In this episode of the Morale Monologue, I’m going to be showing you a video that I put together when I went in for my last workout with my physical therapists. I’ve been doing core strengthening exercises for the past 6 months, and now that my core strength has improved, we are now working on balance exercises. Those of us with SMA, have a difficult time sitting unassisted, without any support on our backs or our sides. This balance exercises video will demonstrate the workout that I perform with my physical therapists. Not only does this exercise improve my balance, it also improves my core strength, such as my abdominal, back and side muscles. When I first started my balance exercises, I had quite a bit of difficulty just sitting unassisted, without anyone touching. Now, I’m able to maintain my balance, and I can now regain my balance if my body starts to lean forward, backwards and from side to side.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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The Morale Monologue #16 - The Differences Between IV and IT Administered Treatments
In this episode of the Morale Monologue, I’m going to try to clear up some confusion that’s floating around the Internet regarding the differences between an IV administered treatment and an IT administered treatment. Those of us that are receiving our Spinraza treatments are receiving them through what is known as an IT, or intrathecal type of delivery system. When AveXis gets their drug, ZOLGENSMA, passed by the FDA, to become the second FDA approved treatment for those of us who suffer from SMA, they will be using an IV administered treatment. The questions that are being asked are what are the differences between these two types of delivery systems, and why these delivery methods were chosen by the pharmaceutical companies for those of us that will be receiving them.
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Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
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The Morale Monologue #15 - Cost Comparison Between Spinraza And ZOLGENSMA
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In this episode of the Morale Monologue, I’m going to show a cost comparison between Biogen’s drug Spinraza and Avexis’s drug ZOLGENSMA. When Biogen introduced Spinraza back in late 2017, the media focused much of their attention on the cost of this treatment versus the benefits that it would have for those of us who suffer from Spinal Muscular Atrophy. Now that Avexis appears to be close to getting their new treatment, ZOLGENSMA, approved as the second FDA treatment for SMA, they too are facing the same questions and backlash from the media. My cost comparison will show the amount of dollars that have been spent on Spinraza, and compare these numbers with the numbers that are estimated to be spent with ZOLGENSMA, once it’s approved. I also try to answer the question as to whether or not those of us that are on active treatment with Spinraza will be able to receive ZOLGENSMA.
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Music Credits:
Acoustic Guitar 1
Acoustic Guitar 1 by Audionautix is licensed under a Creative Commons Attribution license (https://creativecommons.org/licenses/by/4.0/)
Artist: http://audionautix.com/
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The Morale Monologue #14 - The FDA Announces Acceptance And Priority Review For AVXS 101
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In this episode of the Morale Monologue, I’m going to read an article that was posted to the Cure SMA website on Monday, December 3, 2018. The article is entitled Novartis Announces FDA Filing Acceptance and Priority Review For AVXS-101. As most of you know, Biogen was awarded Fast-Track status by the FDA for their drug Spinraza. Avexis’s drug AVXS-101, now known as ZOLGENSMA, was awarded Priority Review designation, which is essentially the same thing as Fast-Track status. The once anticipated acceptance by the FDA was due between June and September of 2019, but since they were awarded Priority Review designation, ZOLGENSMA is now anticipated to receive final approval by the FDA in May 2019. Priority Review designation means the FDA’s goal is to take action on an application within six months, compared to 10 months under standard review. I am reading the article verbatim from the Cure SMA website, and a link to this article can be found just below this description.
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Cure SMA Article:
http://www.curesma.org/news/novartis-avexis-bla-acceptance.html?fbclid=IwAR29Y0Pam_tLaDD-vcTb18ODBldi47rO1Z-2ewr9edUGP6-PvTyxkg--el0
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Music Credits:
Acoustic Guitar 1
Acoustic Guitar 1 by Audionautix is licensed under a Creative Commons Attribution license (https://creativecommons.org/licenses/by/4.0/)
Artist: http://audionautix.com/
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The Morale Monologue #13 - Is Spinraza A Treatment Or A Cure?
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In this episode of the Morale Monologue, I’m going to answer a question that’s been floating around the SMA community and the medical community for nearly 2 years. When Biogen’s drug Spinraza became the first FDA approved treatment for Spinal Muscular Atrophy, there was quite a bit of chatter as to whether or not this was going to be considered a treatment or a cure. When I decided that I wanted to go through the Spinraza injections, early in 2017, I began researching Spinraza over the Internet.
I wanted to know what it was and what it was going to do for me. In my search, I found a YouTube video of an interview that a local television station did in Arizona. They interviewed a young man by the name of Noah Spencer. Toward the end of the video, Noah made a statement that completely threw me off guard. He stated that doctors told him that after he was on this drug for a given amount of time, that he would be able to get up and walk on his own. In the video that you’re about to watch, I copied a small portion of Noah’s interview and included it, so that you could hear exactly what he said, and I then give my interpretation regarding this controversy video. The opinions that I give during this video are my own, and do not necessarily reflect the views of BioNews Services.
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Music Credits:
Acoustic Guitar 1
Acoustic Guitar 1 by Audionautix is licensed under a Creative Commons Attribution license (https://creativecommons.org/licenses/by/4.0/)
Artist: http://audionautix.com/
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Dose of DeAnn
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Dose of DeAnn Episode #28 - My Thoughts On The Movie “The Upside”
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In the latest episode of “Dose of DeAnn,” I share my thoughts on the new movie “The Upside.” This movie stars Bryan Cranston as a wealthy quadriplegic named Phillip Lacasse, and Kevin Hart as his unlikely caregiver Dell Scott.
“The Upside” has already sparked a lot of discussion in many disability communities, primarily over the issue of Cranston being an able-bodied actor playing a disabled character. This is common for movies that deal with characters with disabilities, and I share my thoughts on this issue in my review.
There were things I liked and didn’t like about the movie, and I’d love to hear your thoughts as well. Have you seen “The Upside”? What did you think?
Share your thoughts in the comments, and be sure to subscribe to the SMA News Today YouTube channel. -
Dose Of DeAnn Episode #27 - Using an Amazon Fire Cube
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In this episode of “Dose of DeAnn: A Glimpse Into My Life With SMA,” I unbox a new Amazon Fire Cube (https://www.amazon.com/Hands-Free-Alexa-Ultra-Streaming-Player-x/dp/B01NBTFNVA), and demonstrate how I use this device to stream TV shows and podcasts. Technologies like this allow me to be more independent, and there are new ones being developed everyday.
It’s a pretty simple device to use, and I go through each step for how to connect it to a TV and stream things on Netflix and Spotify. I hope you all find this information helpful, and please let me know if you have any questions. -
Dose Of DeAnn Episode #26 - Preparing for a Snowstorm
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In the latest episode of Dose of DeAnn: A Glimpse Into My Life with SMA, I share how I prepare for an upcoming weather event. Not only is it important to consider your safety but the safety of your caregivers. As the snowstorm hits I show you the increasing snow totals as well as show you my version of building a snowman. Finally I leave you with the sights and sounds of winter.
I’ll be back with another video soon. Until then, take care! -
Dose Of DeAnn Episode #25 - Holiday Baking
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In the latest episode of “Dose of DeAnn,” I share some tips for how other people with SMA can contribute to baking for the holidays. While I require assistance, it’s still possible for me to bake things like cookies and other holiday treats.
Check out my video here to see how my baking routine works, and maybe you’ll come up with some ideas and recipes of your own. Plus, my service dog Roy makes an appearance here as well to provide some assistance. -
Dose Of DeAnn Episode #24 - Interview with Leah from Leah's SMA Adventures
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In this episode of “Dose of DeAnn,” I talk with a fellow YouTuber who has SMA. Leah Vogedes is a bright-spirited middle-schooler who talks openly about her life with SMA in her channel “Leah’s SMA Adventures.”
I was encouraged by Leah’s positive attitude throughout our conversation, and in this interview we discuss a wide range of topics. We talk about Leah’s diagnosis, getting her first electric wheelchair, growing up with SMA, school, friends, and Spinraza. Leah has a remarkable attitude when it comes to all aspects of her life, and I think you all will appreciate what she has to say here.
I hope you enjoy this video. If you do, subscribe to both the SMA News Today YouTube channel, and to Leah’s vlog as well. Let me know your thoughts in the comments, or right here in the forums. Thanks for watching, and I hope everyone here has a great week.
Don't forget to visit Leah's channel here: https://www.youtube.com/channel/UC2IZlj0IsproyzbC-BCklcg
Ryan’s Robotics
