Youtube VLOGS - Most Recent Videos

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Unfortunately, I will not have a video this week. I was in the hospital on Monday, February 3 with chest congestion and severe dehydration. Doctors gave me IV fluids to help with the dehydration and they ruled out pneumonia in the flu, so they gave me antibiotics to take for my chest congestion. With that being said, I didn’t have enough time to put together a video. My next video will come out on Sunday, February 23, and by that time, I should have some more information regarding Roche/Genentech’s new potential treatment known as risdiplam, and I’ll also be talking about scholar rocks new potential treatment called SRK-015, which in my view, will be the next treatment after risdiplam is approved by the FDA. Again, please except my apologies, but I needed to focus on my health, which I’m sure that all of you will fully understand. Thank you. .

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In this week's video, I’m giving some important information regarding an upcoming webinar that will be hosted by Cure SMA and Biogen Pharmaceuticals. This webinar will discuss Biogen’s new upcoming clinical trial called DEVOTE. This clinical trial will look at increasing the dosing amounts of Spinraza that we, as patients receive during our treatments. 

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In this week's video, I answer more important questions for my subscribers and followers regarding Roche/Genentech’s new potential treatment known as risdiplam. These questions are primarily for Roche/Genentech, and for our insurance companies. These are questions that will have to be answered before the FDA gives their final decision as to the approval or denial of risdiplam. 

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In this week's video, some of my subscribers and followers sent me some great questions that they had regarding Roche/Genentech’s new potential treatment known as risdiplam. I picked out 3 questions that I’m answering in this video, and I will answer the other questions in future videos that will be coming up in the next month. These are questions that I believe all of us are going to have with regards to risdiplam, and the videos that I will be doing in the coming months will also address some very important topics that you need to know about so that you can discuss these with your family members and doctors. 

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 In this week's video, I discuss some exciting news regarding a 3rd potential treatment for those of us with SMA. Roche/Genentech was just granted Priority Review Status for their potential treatment known as risdiplam. Receiving priority review status will allow the FDA to expedite the approval or denial of Roche/Genentech’s potential risdiplam treatment, and we could possibly see this approval coming on or before May 2020. My PowerPoint presentation explains risdiplam, and it also explains some of the benefits and advantages that risdiplam could have for all of us. This is great information to share with your families, and it also gives you the information that you need to start speaking to your doctors about this potential treatment before it’s approved. 

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In this week's video, I discussed some exciting news regarding the possibility of the 3rd FDA approved treatment for SMA. The FDA just granted Roche/Genentech, along with PTC therapeutics and the SMA foundation, priority review status for Roche/Genentech's new potential treatment called risdiplam. I discussed this exciting news, and give you information regarding the video that I will be doing in 2 weeks to discuss the benefits of this potential treatment. This would be the very first oral treatment for those of us with SMA, and the benefits that I'm going to discuss in my video in 2 weeks will be quite surprising. 

To view all of my videos, click on the link below.

Youtube Playlists

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This is a collection of every video I have produced on my Youtube channel. These videos are in descending order. 

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This is a collection of the videos I produced using my GoPro Hero 5 Black camera. These videos are in descending order. 

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This is a collection of the videos I produced concerning practical problems.  These videos are in descending order. 

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This is a collection of the videos I produced as I went through my four loadind doses of Spinraza.  These videos are in descending order.

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This is a collection of the videos I produced as I go through my maintenance doses of Spinraza. These videos are in descending order.