Youtube VLOGS - Most Recent Videos

In this week's video, I discussed my last Spinraza injection that I had on Monday, July 6, and I also speak about the Covid-19 test that I had to go through on Friday, July 3. Along with this, I talk about my excitement about switching from Spinraza to risdiplam. 

In this week's video, I talk about one of the most difficult decisions that I've had to make in my life. On Saturday, September 13, I made it official with regards to my decision to switch from Spinraza to risdiplam. After going back and forth with my neurologist over the past 3 months, we decided that given my age, along with other factors, now would be the time for me to make the switch, and in my video, I give you the reasons.

I discuss taking the time to talk to your doctors about risdiplam. We’re probably just a few months away from the FDA approval of risdiplam, and it’s urgent that you speak to your doctors now. Double check and make sure that your doctors are going to be able to prescribe risdiplam for you, and ask them if they have any paperwork that you can start filling out now regarding getting insurance approval. 

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. 

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. 

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. 

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.