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The Morale Monologue
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Steps I Took For My Evrysdi Approval
In this episode of the Morale Monologue, I discuss the steps I took to get approval to start my Evrysdi treatments. Many of us experienced delays when starting our Spinraza treatment, and the majority of these delays were with our insurance companies. Since insurance companies have had enough time to understand the benefits that these treatments have for those of us with SMA, the insurance approval process is becoming much easier. I go into detail about how Genentech treated me when I called them to get more information, and how much of the help they were with regards to the insurance approval process, along with getting everything set up with regards to shipping the treatment to me.
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Phone Number To Genentech Evrysdi Helpline: 1-833-387-9734
Evrysdi Website: https://www.evrysdi.com/support-services.html?c=ris-173847ddbcd
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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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 -
Unbelievable Results From Scholar Rock
In this episode of the Morale Monologue, I discuss the recent announcement by Scholar Rock, regarding the positive proof of concept data from their TOPAZ Phase 2 trial interim analysis of SRK-015 in patients with Type 2 and Type 3 spinal muscular atrophy. This report shows the positive outcomes that Scholar Rock received, and should also raise the level of excitement for all of us within the SMA community.
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Scholar Rock’s Article: https://www.businesswire.com/news/home/20201027005388/en/Scholar-Rock-Announces-Positive-Proof-of-Concept-Data-from-TOPAZ-Phase-2-Trial-Interim-Analysis-of-SRK-015-in-Patients-with-Type-2-and-Type-3-Spinal-Muscular-Atrophy
SMA News Today’s Article: https://smanewstoday.com/news-posts/2020/10/28/muscle-directed-therapy-srk-015-improves-motor-function-patients-with-sma-type-2-3-phase-2-trial-shows/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Changing Our Opinions About Pharmaceutical Companies
In this episode of the Morale Monologue, I discuss how opinions have changed with regards to pharmaceutical companies. Many years ago, the majority of us had negative opinions regarding pharmaceutical companies. We’d heard that pharmaceutical companies were nothing more than these evil monsters only interested in making money, but since the development of Spinraza and the other treatments that are now available for those of us with SMA, we’ve seen a shift with regards to opinions regarding big pharma. Hopefully, after watching my video, you’ll have a different opinion and a better understanding as to how pharmaceutical companies do business.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Possible Combination Therapy For SMA
In this episode of the Morale Monologue, I discuss the possibilities of a future combination therapy for those of us with SMA. There’s been a lot of conversation within the SMA community regarding a possible combination therapy, and while we have 3 treatments for SMA at the current time, the likelihood of 2 of these therapies being combined is not very good. With this being said, Scholar Rock’s new potential therapy that’s under development, called SRK-015, may be our best hope of a therapy that will target both muscle and cellular aspects of our disease.
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To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com
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Link to SMA News Today Article: https://smanewstoday.com/news-posts/2020/08/18/combinations-muscle-therapies-likely-next-focus-for-sma-experts-say/
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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 -
Unbelievable Results So Far With Scholar Rock's SRK-015
In this episode of the Morale Monologue, I discuss Scholar Rock’s new investigational treatment known as SRK-015. This potential treatment will be the first muscle targeted therapy that will address the levels of myostatin that are present in our bodies. Myostatin is a growth inhibitor, which keeps our bodies from building muscle mass. This treatment may allow those of us with SMA to start building muscle mass, and by doing so, get stronger.
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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/2020/08/26/fda-grants-rare-pediatric-disease-designation-to-srk-015-for-sma/
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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
Dose of DeAnn
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Accessible Park Adventure
Hey everyone! Autumn in Minnesota is unpredictable to say the least. That’s why I decided to take advantage of what could possibly be the last nice day of the season and get out and about. Since socially distant activities are somewhat limited at the moment, I decided to have lunch with Mom at a local park. It ended up being a great way to check out some accessible features as well as get in some practice with my service dog Horton. I encourage you to check out your local parks if you have the opportunity.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Epic Service Dog Adventure
Hey everyone! In September, I was unexpectedly invited on an epic adventure. I was notified that Canine Companions for Independence possibly had a successor service dog available. I wasn’t expecting the call until November or February. What that meant for me was a trip to Ohio for a week of training. No easy task. Fortunately, the North Central Region just completed their new training center which included dormitories on site. This video shows you a glimpse of the new facility. You also get to meet Horton, my new service dog. I’m sure you’ll be seeing him in many upcoming videos.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Can You Have a Job When You're Disabled?
Hey everyone! I hope your October is going well. Did you know it’s National Disability Employment Awareness Month [NDEAM]? In this video, I talk about why I think it’s an important topic as well share my career path with you. I’d love to hear about your journey as well! Let’s change the stigma that you can’t have a job and be a productive member of society if you have a disability. Because, I’m living proof that’s not true.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
Jaco Robotic Arm Demo
Hey everyone! I hope you are doing well. Recently I had the opportunity to demo the JACO Robotic Arm from Kinova. Honestly I wasn’t sure what I’d think about it. Earlier I had gotten my hopes up regarding the Dynamic Arm Support but was disappointed when it didn’t work for me. It was a process getting the demo set up since my current power chair doesn’t support the arm. Not only was I able to demo the JACO, but also my future chair. It was a whirlwind of an afternoon, but so worth it. Hope you enjoy the video. If you have questions please don’t hesitate to ask!
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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 -
What's In My Hospital Bag?
I hope everyone is doing well and staying healthy. My recent post about putting together a hospital bag inspired this video. No time like the present to go ahead with it. In the video, you’ll see what I gathered for my bag. How did I do? What did I miss? If you have a hospital bag, I love to hear what’s in it. My hope is that I’m over prepared and will never need it, but if I do, it’ll be ready.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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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
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?