In this week's video, I'm giving everyone an update with regards to my second maintenance dose of Spinraza. On Monday, July 9, 2018, I went back to UT Southwestern Medical Center to receive my injection. I detail everything that happened to me during the procedure, and I also detail what happened when I hit the proverbial brick wall the evening after my injection. I give my suggestions as to what to do, if you find yourself in the same situation that I was in. While this was one of my most successful maintenance dose injections, I learned a valuable lesson on what to do when you hit a stumbling block regarding one of the side effects of the treatment.
In this week’s video, I’m giving my subscribers and followers an update with regards to what I’m doing now, and what I have planned over the next couple of weeks. With the amount of work that I had to do for the 2018 Annual Cure SMA Conference, I thought that this would be a good time to do a video updating what is happening in my life. I was recently asked to be a part of a magazine article there was going to be written in Health Monitor Magazine, and I also discuss the photo shoot that I went through with a professional photographer. Along with this, I also discuss my upcoming maintenance dose injection of Spinraza. This will be my second maintenance dose this year, and my third and final maintenance dose for this year will occur in November. I am scheduled to receive my maintenance doses every April, July and November of each year, and I’m excited about going into the hospital this coming Monday, July 9th two receive my next injection.
In this week’s video, I’m going to be telling everyone about the time that I spent during the two days that I attended the 2018 Annual Cure SMA Conference. While I go over this information, I will also be showing some of the pictures that were taken during this event. Many of the pictures were taken by someone other than myself, but I did include a few of the pictures that I took, and I added these in the presentation as well. These two days that I spent at the conference were probably the most emotionally rewarding two days of my life. I met so many people, and the impact that they had in my life will be something that I carry with me forever. I’ve also uploaded two podcasts to my SoundCloud account, podcast #8 and podcast #9, where I go into further detail regarding the workshops I attended during these two days. If you listen to these two podcasts, you’ll learn the valuable information that I received, and you’ll also hear how I helped a young lady make, what I believe, is a life changing decision. This 45 minute conversation I had with her and her parents was the most important conversation I have had in my life. As a matter of fact, by the time we were finished with our conversation, we were all in tears. Click HERE to go to the podcast section on my webpage. A link to my SoundCloud podcast channel is also located in the SUPPORTING LINKS section of the description in this video.
In this midweek video, I’m showing a portion of a video that was shot during a Facebook live session from Cure SMA during the 2018 Annual Cure SMA Conference. I cropped the video to only include the question that I asked the panel of doctors from the various pharmaceutical companies that they were representing. I pose this question for the two doctors from Cytokinetics and Biogen, and if you listen to the audience’s response after I asked my question, I think you will agree, they too had the same question that I had. The answer that the doctor from Cytokinetics gave us was the answer that all of us have been wanting to hear for a very long time.
NOTE: Click HERE to view the entire Facebook live recording of this Q&A session.
In this week’s video, I’m going to be introducing everybody to Envisagenics, and their new drug discovery platform they call SpliceCore. This discovery platform is nothing more than a huge database of information pertaining to RNA. RNA is an acronym that stands for ribonucleic acid. In layman’s terms, RNA is the in between molecule that reads the information in DNA, so our bodies can produce a complete functional protein. Envisagenic’s goal is to learn how to properly splice this RNA molecule so that they can determine why it is not producing the protein that it should so that those of us with SMA can either sustain the muscle that we already have, or better yet, why we are unable to build new muscle. Their database, SpliceCore, is the largest database to date with regards to RNA sequencing data.
In this week's video, I’m going to be introducing everybody to Scholar Rock, and their new drug, SRK-015. Currently, Scholar Rock is going through a phase 1 clinical trial of their drug, and if successful, they plan on initiating a phase 2 clinical trial during the first quarter of 2019. Scholar Rock is claiming that their drug has the potential to not only help build muscle mass, it potentially will have the ability to reverse some of the damage that has already occurred in those of us who suffer from SMA. Scholar Rock still has to go all the way through the FDA approval process before their drug becomes an actual treatment. Even though this may be a year or two before they get to the treatment stage, everyone with SMA should be excited about the potential that this drug could hold for each and every one of us.
In this podcast, I'm giving everyone an update with regards to my second maintenance dose of Spinraza. On Monday, July 9, 2018, I went back to UT Southwestern Medical Center to receive my injection. I detail everything that happened to me during the procedure, and I also detail what happened when I hit the proverbial brick wall the evening after my injection. I give my suggestions as to what to do, if you find yourself in the same situation that I was in. While this was one of my most successful maintenance dose injections, I learned a valuable lesson on what to do when you hit a stumbling block regarding one of the side effects of the treatment.
This will be part two of a two-part series where I discuss the events that occurred during the 2018 Cure SMA Annual Conference. Please listen to Podcast #8 before listening to Podcast #9. I hope you will take time out of your day to listen to them because what I’m going to be explaining, I hope will impact you as much as it impacted me. What follows, are my thoughts and feelings that I went through during this two-day event. Sit back and listen to part two of this podcast as I detail day two of this conference.
This will be part one of a two-part series where I discuss the events that occurred during the 2018 Cure SMA Annual Conference. These next two podcasts will be a little longer than most, but I hope you will take time out of your day to listen to them because what I’m going to be explaining, I hope will impact you as much as it impacted me. What follows, or my thoughts and feelings that I went through during this two-day event. Sit back and listen to part one of this podcast as I detail the emotional roller coaster that would define day one of this conference for me.
Part two of this podcast series will be available in a few days.
In today’s podcast, I want to share some of the feelings that I’m going through as I prepare for the 2018 Cure SMA Annual Conference. Cure SMA holds these conferences every year, and this will be the first year that I can remember that this conference is going to be held in my hometown of Dallas Texas. While I’m excited about going to this conference, I’m also a little nervous and even scared as to what I’m going to see. Trying to justify my anticipation is going to be difficult, because I have always lived my life to the best of my abilities and accepted those challenges that came with having spinal muscular atrophy. Everyone living on the face of this planet can be defined by how they live their life and the attitude in which they live it. I’ve worked hard in my life to not let spinal muscular atrophy define who I am. For those of you who are able bodied, meaning those of you who can walk, your life is defined by your education, athleticism, brainpower, and other definitive descriptions that others labeled you with. For those of us that are in wheelchairs, we get labeled with the term handicap first, many times before we have a chance to give a better definition of who we really are. In an earlier podcast, I told everyone that when I was young, I was very uncomfortable about being around other handicapped individuals because I didn’t want society placing a label on my life that would define not only who I was at that given point in time, but also would define who I would become in my later years. It wasn’t until college that I completely accepted not only who I was, but it was also at this time that I realize that if anyone was going to put a label on me, it was going to be me that would do this.
In this podcast, I want to spend a few minutes to distinguish the differences between quality of life versus quantity of life. I am in no way an expert on the definition of these two phrases, but I hope you will allow me a chance to give you my definitions. Remember, my definitions of these 2 phrases are my own. I’m giving you my definitions because they work for me, and I hope after hearing what I have to say, you’ll take a moment out of your busy day to define these definitions for yourself.
In this podcast, I'm detailing the frustrations that I'm going through while trying to purchase a new wheelchair cushion. Those of us that sit in wheelchairs for the majority of the day, like myself, have to upgrade our wheelchair cushions as we get older. Many of these cushions degrade over time, and with all of the new space-age materials that are being used, these newer wheelchair cushions give us the support that we need so that we can avoid skin breakdowns and skin lesions. The problem with having to order a new cushion is trying to find a company that not only knows what they're talking about, but also finding a company that can actually provide you with the correct product that you need. I'm having to deal with a company that I've dealt with in the past, and this company through customer service out the window many years ago in exchange for their own net profit. Sit back and listen to the frustrations that I had to go through over the past several weeks. Hopefully, your experience will be better than mine.