Youtube VLOGS - Most Recent Videos

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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. 

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In this week’s video, I’m discussing how routine Spinraza is in my life. When all of us started our Spinraza treatments, there were a myriad of questions that needed to be asked and answered. After completing my 10th Spinraza injection, I started thinking how this treatment has become routine, and it’s just another day in my life. 

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In this week’s video, I’m discussing how difficult it may be for some of us with SMA to find a physical therapist. The majority of physical therapists have probably never worked with a patient with SMA, and the fear of the unknown, can make it difficult to find one that’s willing to work with you. I share my knowledge with regards to finding a physical therapist, and I also discuss my lecture that I did at U.T. Southwestern Medical Center’s School of Physical Therapy. I had the honor and privilege of talking to the doctorate students who are about to graduate either in December of this year, or May 2020. 

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.