Youtube VLOGS - Most Recent Videos


In this week’s video, I’m answering 2 questions that were sent to me regarding Roche/Genentech’s potential treatment called risdiplam. Currently, risdiplam is under FDA review, and should be passed in either April or May, to become the 3rd FDA approved treatment for those of us with SMA. The questions that I’m going to be answering are ones that I feel that you should speak to your family and doctors about, and since we may only have another month or two before this treatment becomes a reality, these questions will help you possibly decide on whether or not risdiplam will be right for you. 


In this week’s video I’m discussing another biopharmaceutical company by the name of Scholar Rock, and their potential treatment known as SRK-015. I discuss how SRK-015 impacts our body, and how it differs from Spinraza, Zolgensma and risdiplam. While it may be over a year before this potential treatment gets approved by the FDA, it’s still proof that pharmaceutical companies are making advancements toward new treatments for those of us who suffer from spinal muscular atrophy. 


In this week's video, I discuss the webinar that was co-hosted by Biogen Pharmaceuticals and Cure SMA. This webinar dealt with the new clinical trial called DEVOTE, and this clinical trial will concentrate on Biogen's attempts to increase the dosing amount of Spinraza. Normally, these webinars are extremely informative, and while this webinar was good with regards to the PowerPoint presentation and the information that was given from the doctors from Biogen, the question and answer part of the webinar failed miserably. Normally, they usually answer anywhere from 10 to 15 questions, but in this webinar, they only answered about 3 or 4 questions, and then they wrapped up and concluded the webinar. Given the fact that they had scheduled this webinar to last one hour, and only used 23 minutes before signing off, left a sour taste in my mouth. None of the questions that I sent in were even addressed, so while the first part of the webinar was very informative, the last part of the webinar left a lot of room for improvement. I also discussed how YouTube has decided to disable the comments section in my videos, and I tell you how you can reach me by either sending me an email, or going to my website. 


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. .


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. 


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. 

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

Youtube Playlists


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


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


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


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.


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