Youtube VLOGS - Most Recent Videos

I discuss the reality of what Spinraza and Evrysdi  ACTUALLY do for those of us with SMA. 

I discuss my choice to switch back to Spinraza after starting Evrysdi.

I discuss a new potential therapy that will boost the amount of SMN protein in the SMN2 gene.

I discuss exciting news regarding Scholar Rock’s potential therapy, once known as SRK-015, now known as apitegromab.  

I discuss a procedure that I’m going through in physical therapy called dry needling. 

In this week’s video, I discuss Biogen Pharmaceutical’s DEVOTE clinical trial.

I discuss whether or not patients with SMA should take the COVID-19 vaccine.  

I discuss how some SMA patients may experience gastrointestinal issues while on an FDA approved treatment for SMA.

I discuss one of the positives that came from the COVID-19 Pandemic. 

I discuss the importance of finding a pulmonologist and having your PFTs.

I discuss the steps I took to get approval to start my Evrysdi treatments.

I discuss the steps I took to get approval to start my Evrysdi treatments. 

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.