Youtube VLOGS - Most Recent Videos

In this week's video, I discuss some frequently asked questions [FAQs] regarding Evrysdi. These are some of the questions that are circulating around the SMA community, and my video answers some of the most important questions that have been asked so far. 

In this week's video, I discuss the differences between Spinraza and Evrysdi (risdiplam). Since the FDA approved Evrysdi on Friday, August 7, I wanted to explain the differences between these 2 treatments. While they both work about the same with regards to the SMN2 gene, they go about it in different ways, and the differences are quite significant. By knowing the differences between these 2 treatments, you can speak to your doctors about which treatment would be best for you.

In this week's video, I discussed the recent FDA approval of risdiplam. At approximately 1 PM CST, on Monday, August 7, 2020, the FDA announced that risdiplam, now known as Evrysdi, was approved for all types of SMA and all ages from 2 years of age and up. I go over how they made this decision, and also discussed the label that they wrote regarding the use and administration of this treatment.

In this week's video, I talk about some of the recent problems that I’ve had regarding the swelling in my feet and ankles. This is a problem that the majority of SMA patients have, due to the fact that we live such sedentary lifestyles. During physical therapy, my physical therapists, along with their students, performed the procedure on me that help to push some of the swelling from feet, ankles and lower legs, up towards my upper extremities, where my body can disperse some of this fluid and possibly get rid of it. This is an important video to watch, because if you’re suffering from this same problem, maybe you can speak to your physical therapists about doing this procedure on you.

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.

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.