Youtube VLOGS - Most Recent Videos

image68

In this week's video, I’m going to be discussing my opinions as to whether or not you should begin taking Spinraza now, or wait until AveXis gets their drug, ZOLGENSMA, approved through the FDA to take this drug into treatment status. When ZOLGENSMA does become available, it will only be for infants that are nine months of age or younger, that have been diagnosed with SMA Type I. Over the past month, I’ve received emails from a few of my subscribers and followers asking my opinions as to whether or not they should get their infants involved in Spinraza or wait until ZOLGENSMA becomes available. These are very difficult questions for me to try to answer, but I do give my own personal opinion as to what I would do if I had an infant that was diagnosed with SMA type I. 

image69

In this week's video, I’m going to try to clear up some confusion that’s floating around the Internet regarding the differences between an IV administered treatment and an IT administered treatment. Those of us that are receiving our Spinraza treatments are receiving them through what is known as an IT, or intrathecal type of delivery system. When AveXis gets their drug, ZOLGENSMA, passed by the FDA in May 2019, to become the second FDA approved treatment for those of us who suffer from SMA, they will be using an IV administered treatment. The questions that are being asked are what are the differences between these two types of delivery systems, and why these delivery methods were chosen by the pharmaceutical companies for those of us that will be receiving them. 

image70

In this week's video, I’m going to go over the results that Laura and I got during my four week reevaluation process. Every four weeks, Laura has to reevaluate my progress regarding the core strengthening exercises that we are doing, along with all of the measurements regarding my leg, foot, knee and ankle exercises. This past week when I went in for my workout with Laura, this was reevaluation day. During this process, Laura is physical therapy assistant, Emily, took pictures, and I put these pictures to 3 short videos about 50seconds of each so that you can see exactly what happens. To be honest with you, I was extremely disappointed in the results that we got last week, and in this video, I detail exactly why we got the results that we did, and my plans on what needs to happen to improve these results before next month’s reevaluation. I would love to be able to blame someone else for the negative results that I got during my past reevaluation, but the only person that I can blame is myself. This will be my last video until Sunday, January 6. I’m going to take next week off so that I can be with family and friends during the Christmas holiday period. I wish all of my subscribers and followers, and their family members, a Merry Christmas and a happy new year. Thank you for supporting me in 2018, and I look forward to bringing you more videos in 2019, that will hopefully give you some good information regarding my journey and spinal muscular atrophy. 

image71

In this week's video, I give a cost comparison between Biogen’s drug Spinraza and Avexis’s drug ZOLGENSMA. Even before the potential approval by the FDA for ZOLGENSMA, there are already numerous Internet articles talking about the price of this potential one time injection. When Biogen introduced Spinraza in late 2017, the media focused on the cost of this therapy versus the benefits that it would have for those of us with SMA. The same thing is happening with ZOLGENSMA, and I wanted to do a cost comparison to show my subscribers and followers how to address this particular issue. Along with my advice, I give you my perspectives on what I think regarding this issue, along with words of encouragement. 

image72

In this week's video, I’m going to go over the exciting news that was released on Monday, December 3, 2018 on the Cure SMA website. The FDA has accepted Avexis Pharmaceutical’s Biologics Licensing Application, (BLA), regarding their drug AVXS-101. This is the first step in the possible approval to bring AVXS-101 to treatment status for those of us who suffer from SMA. Not only did the FDA approve Avexis Pharmaceutical’s BLA, they also gave Avexis Pharmaceuticals Priority Review designation. The FDA granted Biogen Pharmaceuticals Fast-Track status for their drug Spinraza. Priority Review designation is essentially the same as Fast-Track status. Now, instead of this treatment being available to us between July and August 2019, we can see this treatment becoming available as early as late April to May 2019. Given the positive results that Avexis reported during their clinical trials, I see no reason for the FDA to deny Avexis Pharmaceuticals in their attempts to bring this drug to treatment status. AVXS-101 is now known as ZOLGENSMA. In the description of my video, there's a link to the entire article that was published on the Cure SMA website on Monday, December 3, 2018.

image73

 In this week's video, I’m going to discuss the recent results from my reevaluation on my legs, feet and neck. Every 4 weeks, Laura reevaluates me to check my progress with regards to the exercises that we’re doing. Laura and I began working on the muscles in my legs for 2 reasons. First, I wanted to stretch these muscles and ligaments in my leg to improve the strength, range of motion and flexibility. Second, due to my recent CT scan that was done that revealed damage to my right hip and leg, working on the hamstring and quadricep muscles in my legs has decreased the amount of pain that I’m going through on a day-to-day basis. We began working on the muscles in my neck to improve the rotation as I look to my left and to my right, and we are also working on the amount of side bending that I can do when I bend my head to the left or to the right. After each reevaluation, I will post these results to my website so that you can track my progress. Click HERE to view my test results.

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

MY YOUTUBE Channel

Podcasts - Most Recent

image74

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. 

image75

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. 

image76

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. 

image77

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. 

image78

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. 

image79

 In this podcast, I’m going to answer a couple questions that my subscribers have sent me through my YouTube channel or my email account. The first question that I answer involves whether or not I think the frustrations that I went through while getting approval to begin my Spinraza treatments was worth it. The second question that I answer involves whether or not I have noticed any changes to my physical strength and conditioning after beginning my treatment’s. These two questions were asked by multiple subscribers, and I felt doing a podcast would be the best way for me to share my responses to these very important questions with everyone. Please be sure to listen to the end of the podcast, because I explained in great detail as to the reasons why Biogen Pharmaceuticals mean so much to me. Their commitment that they have shown me, is the reasons why I am able to go through this life-changing treatment. 

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

MY PODCAST CHANNEL

Youtube Playlists

image80

This is a collection of every video I have produced on my Youtube channel. These videos are in descending order. 

image81

This is a collection of the videos I produced using my GoPro Hero 5 Black camera. These videos are in descending order. 

image82

This is a collection of the videos I produced concerning practical problems.  These videos are in descending order. 

image83

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.

image84

This is a collection of the videos I produced as I go through my maintenance doses of Spinraza. These videos are in descending order.