Youtube VLOGS - Most Recent Videos

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In this week’s video, I’m announcing a change with regards to my YouTube channel. Over the past 3 years, I’ve been documenting my journey with regards to my treatments, and while producing these videos, I’ve learned an extraordinary amount of information regarding not only Spinraza, but other treatments that have become available to those of us with SMA, along with other potential treatments that we could see in the not so distant future. Since I’m now working full time, my schedule is become extremely busy, and since we’ve covered the gamut of topics regarding SMA, I’m going to be scaling back on the number of videos that I upload to my YouTube channel. I started out my channel with a video every week, and then moved to every other week with regards to my uploads. Now, I’m going to be uploading to my YouTube channel when I find information that I think you need to know, and this may mean that I only upload every 3 weeks or even once a month. 

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In this week’s video, I discussed the differences between Roche/Genentech’s potential treatment known as risdiplam, and Scholar Rock’s potential treatment known as SRK-015. We expect a decision by the FDA regarding risdiplam no later than August 24 of this year. While they were supposed to make this announcement no later than May 24 of this year, the FDA recently requested further data from Roche/Genentech, so that they could broaden the label to include a wider population of older patients, and this additional data required the FDA to delay this announcement for up to 3 months. My video talks about the differences between risdiplam and SRK-015, and highlights some key differences between these treatments.


NOTE: I’ve included numerous articles that were written by SMA News Today, regarding risdiplam and SRK-015. Please be sure to read these articles and discuss them with your family and friends, along with your doctor. 

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In this week’s video, I discuss a recent decision by the FDA regarding Roche/Genentech’s new potential treatment known as risdiplam. Recently, Roche/Genentech submitted additional data to the FDA to include older patients, and their ability to receive this treatment if and when it’s approved by the FDA. I include information regarding why the FDA has decided to push the decision regarding risdiplam to August, and why this was a good decision by both Roche/Genentech, and the FDA.


NOTE: In my video, I state that I’m linking an article that was written by BioNews Services regarding this topic, but there are 2 articles that are linked in this description. Please read both articles and share them with not only your family and friends, but also your doctors. 

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In this week's video, I’m discussing how COVID-19 is impacting those of us around the world, and I’m sharing some of my tips and tricks to deal with the isolation that all of us are going through. I also give some advice with regards to speaking to your family members and doctors. 

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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. 

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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. 

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.