Youtube VLOGS - Most Recent Videos

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In this week’s video, I’m sharing information that was given during the recent Cure SMA webinar, where they gave some great updates regarding Zolgensma. I focus on the 2 clinical trials from AveXis Pharmaceuticals, and I also give my answer as to whether or not I’m going to switch from Spinraza to Zolgensma when it becomes available to those of us that are adults. 

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In this week’s video, I’m sharing the video that I did for my physical therapist, Emily, and it involves the proper and safe way to transfer a patient with SMA. She transfers me from my wheelchair to the therapy table every other week, and this video demonstrates not only keeping the patient safe, but also keeping the therapist safe as well when going through the transfer process. 

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In this week’s video, I answer a question that quite a few of you have asked me in the past, but until now, I felt uncomfortable answering. The question revolves around my reasons why I chose not to be an Ambassador for Biogen Pharmaceuticals. My reasons for not becoming an Ambassador were ones that I had to seriously consider, and I think after listening to my reasons, you’ll fully understand why I made the decision that I made. 

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In this week’s video, I talk about something that has nothing to do with SMA, but it’s a subject that all of us with SMA may have to face at certain times in our lives. Recently, the 2019 Annual Cure SMA Conference was held in Anaheim California. Due to my inability to fly, I was unable to attend this conference, and in my video, I share my feelings as to what needs to be changed so that those of us in wheelchairs, have the ability to fly like anyone else. This is the right that we not only want and need, it’s a right that we deserve. 

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 In this week’s video, I sharing what happened to me when I went back to UT Southwestern Medical Center’s William P. Tate University Hospital for my 9th Spinraza injection. This was actually my 5th maintenance dose injection, and I not only share what happened to me, I also give you some advice on how to avoid getting a headache after one of your procedures. 

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In this week’s video, I discuss how Spinraza may, or may not be helping me. I talk about the differences between the way I felt while receiving my loading dose injections, versus how I feel while going through my maintenance dose injections. The differences may surprise you, and I’m hoping that the information that I give you, will give you information that you can talk to your doctors about. 

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

MY YOUTUBE Channel

Podcasts - Most Recent

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In this podcast, I discuss my feelings as to whether or not I feel that Spinraza has done me any good. While many of us are on this treatment, some of us are receiving better benefits than others, and with the potential approval of another FDA approved treatment coming in May or June of this year, those of us that are on Spinraza, will start to see choices with regards to treatments for our disease. 

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In this podcast, I discuss the topic that is very important in my life. While I never try to preach my Christianity to any of my subscribers or followers, my belief in God is a subject that I’m not afraid to talk about. Growing up in a Christian household, taught me the importance of my faith and while I don’t necessarily talk about it on my YouTube channel or my other social media and multimedia accounts, it’s still a subject that I put first in my life. I had something that happened to me not too long ago that caused me to think about my faith, and I wanted to share this story with you so that you could fully understand why I believe in God and his son, my Lord and Savior Jesus Christ. This podcast is not meant to push my religion on anybody that decides to listen to it, but please understand that my faith will always come first in my life and that everything else must take a backseat with regards to importance. 

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In this podcast, I discuss whether or not Spinraza should be considered a cure or a treatment. The word cure is being tossed around regarding Biogen’s drug Spinraza. In my opinion, this word is being passed around to quickly and to easily, and those of us that are on active treatment with Spinraza, need to understand the differences between these two words. In my podcast, I give my opinions as to what I believe Spinraza should be considered. 

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In today’s podcast, I would like to read an article that was released from Avexis pharmaceuticals on October 18, 2018. Avexis pharmaceuticals is in the process of filing for FDA approval for their drug known as AVXS-101. For quite some time now, Avexis has been going through clinical trials of their drug AVXS-101, and some of the results that Avexis has received from these clinical trials have been dramatic to say the least. This filing for FDA approval is just another example of what I’ve been speaking about for the past year. I’ve been saying that we, as SMA patients have a lot to look forward to and I’ve also stated many times that I felt like there would be multiple treatments that would become available sometime within 2019. I’m going to be reading verbatim from this article, and I will also link this article in the description of my podcast so that you can click on the link and view the article for yourself. 

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In this podcast, I’m doing my first podcast interview for BioNews Services. I was recently offered a full-time position with BioNews Services as their Forums Director. Every once in a while, I get to do podcast interviews with individuals who are active within the SMA community. Anytime I do a podcast interview for BioNews Services, I will include them in my SoundCloud account for those who are following me in my podcast series. In today’s interview, I am speaking with Shawn Smith. Shawn recently had an SIC port implanted in his body so that he could receive his Spinraza treatments. SIC is an acronym that stands for Subcutaneous Intrathecal Catheter. This port is being tested on SMA patients to see if this would make it easier for us to receive our treatments that we must go through for the rest of our lives. Shawn gives first-hand knowledge of this SIC port, and also gives valuable information for those of us who are considering talking to our doctors about this medical device. 

To listen to all of my podcasts, please click the link below.

MY PODCAST CHANNEL

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.