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    • Home
    • Youtube VLOGS & Playlists
    • Photo Gallery
    • SMA Related Web Articles
    • Pharmaceutical Companies
      • Avexis Info
      • Biogen Info
      • Cytokinetics Info
      • Novartis Info
      • Roche Info
    • Downloads
      • PowerPoint PDF Files
      • Webpage PDF Files
    • SMA Definitions
    • Helpful Links
    • High Protein Foods
  • Home
  • Youtube VLOGS & Playlists
  • Photo Gallery
  • SMA Related Web Articles
  • Pharmaceutical Companies
  • Downloads
  • SMA Definitions
  • Helpful Links
  • High Protein Foods

Youtube VLOGS - Most Recent Videos

Video #241

Video #241

Video #241

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

Video #240

Video #241

Video #241

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

Video #239

Video #241

Video #239

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

Video #238

Video #238

Video #239

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

Video #237

Video #238

Video #237

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

Video #236

Video #238

Video #237

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

Video #235

Video #235

Video #235

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

Video #233

Video #235

Video #235

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

Video #232

Video #235

Video #232

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

Video #231

Video #231

Video #232

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

Video #230

Video #231

Video #230

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

Video #229

Video #231

Video #230

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

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

MY YOUTUBE Channel

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.

This website was created by smajourney51 and its developer, Michael P. Morale.  The name smajourney51 and its corresponding logo are not to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51.  No videos on the smajourney51.com website or the smajourney51 YouTube channel are to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51.  All links, videos, graphics, personal opinions and advice are meant for informational purposes only.  Subscribers and followers to my website, YouTube channel, Facebook page, Twitter account and Instagram account should consult their personal physician for any medical advice.  The information that I provide in the above listed social media sites are my own personal opinion, and should not be used by any of my subscribers and followers when making medical decisions.


Copyright © 2021 smajourney51-All Rights Reserved.

It's Time To Face The Reality

In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.


I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.


This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.


Be sure to read Emily's latest article:

https://hcp.smanewstoday.com/2021/03/15/qa-between-physical-therapist-and-sma-patient/