Youtube VLOGS - Most Recent Videos

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In this week’s video, I discussed the recent approval from the FDA of AveXis’s drug known as ZOLGENSMA. The FDA made the official announcement on Friday, May 24, 2019, making ZOLGENSMA the 2ndFDA approved treatment for those of us who suffer from spinal muscular atrophy. I not only discuss the FDA approval of ZOLGENSMA, I also share a document that was written by SMA News Today regarding this historic announcement. 

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While I only do my videos for my YouTube channel every other week, I’m producing another video this week because of some exciting news regarding AveXis’s drug candidate ZOLGENSMA. We have received information that AveXis has provided additional information to the FDA, and have asked the FDA to broaden the label of their potential new drug therapy. The initial request was for SMA Type 1 infants, who were 9 months of age or younger. Now, AveXis is requesting that the label also include children with SMA Type 2, who are 5 years of age or younger. Since this is exciting news for all of us who have spinal muscular atrophy, I thought I should produce another video to keep everyone updated with regards to the latest news. 

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In this week’s video, I discussed the latest with regards to AveXis’s drug ZOLGENSMA. While there is not an exact date as to when the FDA is going to make their announcement, I do share a little information that I received about a possible date, along with discussing what’s been happening in my life for the past 2 weeks.

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In this week’s video, I discussed a topic that’s important for all of us who suffer from SMA to think about. If you’ve been in a wheelchair as long as I have, you probably have some pretty gnarly looking feet. Coupled with the swelling that I have in my ankles, and not being able to properly take care of my feet, I started seeing a podiatrist about 10 years ago. I give you my advice on how to properly take care of your feet, which will give you one less thing to worry about in your day-to-day life. 

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In this week's video, I talk about the upcoming approval from the FDA regarding AveXis’s drug ZOLGENSMA. Even though we anticipated the approval around the end of May or 1 June, I discussed my gut feelings regarding when I think ZOLGENSMA will be approved as the second FDA approved treatment for those of us who suffer from spinal muscular atrophy. My opinions are my own, but I’m usually correct when it comes to listening to my gut feelings. Along with sharing my opinions regarding the upcoming approval, I also give you some advice on what to do so that you can make an informed and educated decision as to whether or not you would eventually want to receive this particular treatment. 

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In this week's video, I go into detail as to the reasons why I didn't post a video last week, and also describe what happened to me when I went to the hospital and was diagnosed with prostatitis. I also announce that I am only going to be doing my videos every two weeks, versus weekly videos. I'm doing this because my work schedule for BioNews Services has increased, and right now, there's not really a lot of new information to report on myself. Besides physical therapy, everything else seems to be copacetic, and after my schedule settles down with BioNews Services, and there is more information to report within the SMA community, I will start doing weekly videos at that point.

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. 

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In this podcast, I’m going to be reading an article that was written and published on the Muscular Dystrophy Association website on July 5, 2018. I would like to read this article verbatim because the information that I’m about to share with you, is something that I feel everyone needs to know, especially for those you that are trying to have children. The title of this article, SMA Added To National List Of Disorders To Screen For At Birth, was written by Kristin Stephenson. Please remember that everything that I’m about to read you, is coming verbatim from the article itself. 

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.