In this week's video, I discuss what happened to me on Monday, March 11, 2019, when I went back to UT Southwestern Medical Center in Dallas Texas for my 8th injection of Spinraza. This was the beginning of my second year of maintenance doses, and I detail exactly what doctors did to me, and I also discuss a change that doctors made to my procedure which made it much easier for me.
In this week's video, I discuss my new balance exercises that I’m doing with my physical therapist Emily. We are now using a therapy ball during my balance exercises to improve my core strength and balance while sitting unassisted. During my workout with Emily on Tuesday, March 5th, we took a few pictures of me performing this exercise, and I put these pictures in a short video detailing exactly what we are trying to achieve with this particular exercise. I also discuss my upcoming Spinraza injection which is scheduled for Monday, March 11, 2019.
In this week's video, I discuss a question that many of us are going to be facing in the coming months. With the potential approval of ZOLGENSMA from AveXis Pharmaceuticals, in May or June of this year, those of us on Biogen’s drug, Spinraza, will be faced with the decision as to whether or not we should forgo the Spinraza treatments and began ZOLGENSMA, or remain on Spinraza. In my video, I give you my opinion as to how I feel regarding this potentially life-changing decision, and I share my thoughts on how I’m going to approach this decision.
In this week's video, I discuss a topic that completely ruined my week. A few months ago, I did video where I discussed how SMA had been added to the national registry in the United States for newborn screenings. While SMA was added to the national registry, it still needs to be adopted by each individual state to become effective. Some of the information that I was able to get completely blew my mind, with respect to the complexity and difficulty it takes to get this disease added at the state level so that doctors can begin screening newborns immediately after their birth. This subject is dear to my heart, because we are so close to eradicating SMA in these little infants. I give you my advice on what to do and I ask all my subscribers and followers to please take action on this as soon as possible.
In this week's video, I discuss a couple of topics. First, I made a change to my website to include all of the podcast and flash briefings that I help produce for my employer, BioNews Services. I have included the podcast and flash briefings on my website so that my subscribers and followers will have access to them. Then, I review some of the information pertaining to a combination therapy between Cytokinetic’s drug, Reldesemtiv, and Biogen’s drug, Spinraza. They are currently testing these two drugs in a combination therapy for those of us who suffer from SMA.
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.
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.
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.
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.
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.
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.
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