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The Morale Monologue
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The Morale Monologue #26 - 4 Tips To Follow Before And After Your Spinraza Injection
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In this episode of the Morale Monologue, I discuss 4 tips that I follow before and after my Spinraza injections. These tips that I’m giving, will hopefully make your future Spinraza injections go as smooth as possible.
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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 #25 - Key Differences Between Spinraza And Zolgensma
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In this episode of the Morale Monologue, I discuss the key differences between AveXis’s drug ZOLGENSMA and Biogen’s drug Spinraza. I explain what Spinraza does with regards to the SMN2 gene, and what ZOLGENSMA does with regards to the SMN1 gene.
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YouTube Video Explaining Exon 7: https://www.youtube.com/watch?v=YLluIVwg_y4&index=4&list=LLu6wTX2VsrOIgRP7xXcsAFA&t=0s
Article #1 From SMA News Today: https://smanewstoday.com/2019/05/26/great-news-to-such-a-blessing-greet-zolgensmas-approval/
Article #2 From SMA News Today: https://smanewstoday.com/2019/05/24/how-zolgensma-works-and-clinical-trials-spanning-range-of-sma-patients/
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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 #24 - EXCITING News Regarding Zolgensma
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In this episode of the Morale Monologue, I discuss some exciting news regarding AveXis’s drug candidate ZOLGENSMA. We have received information that AveXis has provided additional information to the FDA, and have asked the FDA to broaden the label of their potential new drug therapy. The initial request was for SMA Type 1 infants, who were 9 months of age or younger. Now, AveXis is requesting that the label also include children with SMA Type 2, who are 5 years of age or younger, based on some of the results behind the trial of their intrathecal (IT) delivery method.
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Web Link To AveXis Article: https://smanewstoday.com/2019/05/06/aanam-type-2-patients-taking-well-to-zolgensma-with-motor-milestones-and-no-safety-concerns/
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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 -
The Morale Monologue #23 - ZOLGENSMA Come Out Come Out Wherever You Are
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In this episode of the Morale Monologue, I discuss a possible approval date for AveXis Pharmaceutical’s drug candidate called ZOLGENSMA. I also provide a web link in the description of my video that discusses some of the preliminary results during the clinical trials of ZOLGENSMA. SMA News Today has created a subforum dedicated to ZOLGENSMA. In this subforum, we are listing all of the updates and late breaking news regarding this potential treatment for spinal muscular atrophy.
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Web Link To Clinical Results: http://www.curesma.org/news/avexis-aan-data2019.html
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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 #22 - Foot Care Made Simple
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In this episode of the Morale Monologue, I discussed a topic that’s extremely important for all of us who suffer from SMA. Foot care is a subject that all of us have to address, and proper foot care cannot only improve the quality of our life, it can make sitting in a wheelchair more comfortable. We have enough issues to deal with in our life, so by eliminating problems with our feet, this is one less thing that we have to worry about. I give my suggestions on how to not only help control the issue of swelling in your feet and ankles, I give you my advice on easy ways to keep your toenails trimmed.
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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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Dose of DeAnn
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Dose of DeAnn #37: Spinraza, Zolgensma, and Other SMA Treatments
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In this video, I share my thoughts on the different treatments for SMA. Some of these drugs are already available, while others are in development and in clinical trials.
As treatments like Spinraza and Zolgensma come to the market, the face of SMA is changing day by day. As such, questions and concerns arise. These concerns include access to treatment, how SMA types are categorized, and if the standard equipment for SMA individuals is really necessary. I discuss my thoughts regarding these topics.
What questions do you have about the state of SMA research? Are you on any active treatment? -
Dose of DeAnn Episode #36 - Service Dog Grooming & Re certification
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In the latest episode of “Dose of DeAnn,” I talk about how I have to get my service dog Roy re-certified every few years. Canine Companions, which is the organization I use, does this to make sure that the dog is still qualified to work for his or her owner. We meet the trainers at the Mall of America, and it’s a pretty simple process.
Roy and I passed the certification test with flying colors, and I documented the whole experience in this video. I’d love to hear your thoughts in the comments section, or here in the forums.
Who here has a service dog? Do you have to do this re-certification test as well?
Thanks for watching! And be sure to subscribe to our YouTube channel if you haven’t already. -
Dose of DeAnn Episode #35 - Out of my Control
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In my latest video, I talk about how there are times when things are totally outside my control. Recently, I was home alone when I discovered that the batteries in my smoke alarm were dead. I had no choice but to wait until one of my PCAs arrived to change the batteries. Unfortunately those were bad too!
This is just one of many instances of me accepting that there are things I simply can’t do. It’s just a part of life with SMA (or a similar disability), and it happens regularly. Fortunately, I’ve managed to come up with a lot of solutions so that I can live independently, but there are still things I have to rely on other people for.
Can you relate to this subject matter? Some of these scenarios can be pretty comical, and I’d love to hear your stories.
Leave a comment here and be sure to subscribe to the SMA News Today YouTube channel if you haven’t already.
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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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Dose of DeAnn Episode #34 - Dental Hygene with a Disability
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In the latest episode of “Dose of DeAnn,” I talk about dental hygiene. Like most people, I hate going to the dentist. When you throw SMA into the equation, it adds additional challenges. Still, dental hygiene is an important topic, and in this video I show clips of me at a recent dentist appointment. I also show how I brush my teeth when I’m at home. Hopefully you, or someone you know who has SMA, can benefit from the tips I share here.Do you have any tips for making dentist appointments any easier? Do you do anything in particular when it comes to dental hygiene?
Let me know in the comments, and please subscribe to the SMA News Today YouTube channel.
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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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Dose of DeAnn Episode #33 - Speechless
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In the latest episode of “Dose of DeAnn,” I talk about the ABC sitcom “Speechless.” We’ve discussed this show here on the forums many times before, and I wanted to expand on my thoughts here, and talk about the recently concluded season three.
This show does a great job using humor to portray disability. The main character J.J. has cerebral palsy, and the show chronicles the adventures of him and his quirky family. Also, the actor Micah Fowler, who plays J.J., has cerebral palsy in real life. This of course adds a certain layer of authenticity to the show. Many of the writers have disabilities as well.
Do you watch “Speechless” on ABC? What do you think about this show? Let me know your thoughts in the comments section.
Also, be sure to subscribe to the SMA News Today YouTube channel. Thanks for watching, and have a great day!
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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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Ryan’s Robotics
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Ryan’s Robotics Episode #5: Modifying My Suction Machine
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In this episode, I talk about modifying my suction machine so that I can operate it with my JACO robotic arm. A suction machine is something that many of us in the SMA community use to help with our breathing and swallowing. Prior to this modification, I had to rely on other people to help me use it.
It’s exciting to continually gain more independence with my JACO arm, and this is just another example. I hope you all enjoy this video, and please be sure to subscribe to our YouTube channel if you haven’t already. Thanks for watching!
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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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Ryans Robotics Episode #4 - Using the JACO Robotic Arm in Public
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Check out the latest episode of “Ryan’s Robotics” here. In this episode, I give viewers a glimpse of how I use my JACO robotic arm in public. Since I go to Starbucks all the time, I filmed some footage of me getting coffee and paying for my order. You’ll get to see how the arm comes into play here, and how it increases my independence.
Hope you enjoy this video! Let me know your thoughts in the comments, and be sure to subscribe to the SMA News Today YouTube channel. Hope you all have a great day.
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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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Ryan’s Robotics Episode #3 - How I Acquired My JACO Robotic Arm
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In the latest episode of “Ryan’s Robotics,” I talk about how I acquired my JACO robotic arm. I take viewers through the process of testing out a model JACO arm, how I went about fundraising, and what it was like when I started to use mine.
This video is straightforward, but I hope it will answer some questions for those looking to acquire one of these devices. Feel free to ask me questions here or in the forums, and also check out the company’s website at http://www.kinovarobotics.com.
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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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Ryans Robotics Episode #2 - Four Key Features Of His Jaco Robotics Arm
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In the second episode of our new series “Ryan’s Robotics” on the SMA News Today YouTube channel, I talk about how my JACO robotic arm works. Like I talked about in my first video, the arm is mounted to the side of my wheelchair and controlled by my joystick. Here, I explain how to switch modes on it and operate each of its joints.
I demonstrate how to move the arm up and down, turn the wrist, and move the fingers. With its different modes and functions, the arm allows me to use it for a variety of tasks in my everyday life.
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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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Ryan's Robotics Episode #1 - Ryan Berhar And His Jaco Robotic Arm
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Hello, and welcome to the first episode of my new video series “Ryan’s Robotics” on the SMA News Today YouTube channel. In this series, I will show you how certain technologies help me live more independently. In particular, I will talk about my JACO robotic arm, a device I acquired in 2018.
In this first video, I show you all some of the things I use my robotic arm for, such as getting a drink of water and operating my tv remote. This device is mounted to the side of my wheelchair, and I’m able to control it through my joystick. Throughout this series, I’ll talk more in-depth about how the arm works and the things I use it for.
Let me know your thoughts in the comments section! Also, be sure to subscribe to the SMA News Today YouTube channel for more videos like this.
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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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