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In this week's video, I answer more important questions for my subscribers and followers regarding Roche/Genentech’s new potential treatment known as risdiplam. These questions are primarily for Roche/Genentech, and for our insurance companies. These are questions that will have to be answered before the FDA gives their final decision as to the approval or denial of risdiplam.
We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help of her niece DeAnn pulled a prank on her Mom.
Forums Director Kevin Schaefer talks about the importance of media
representation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the forums. Alyssa is adjusting to her new wheelchair. DeAnn is dealing with a caregiver who's sick.
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist
This video explains how exon 7 impacts those of us with SMA.
EXCELLENT VIDEO TO WATCH
Welcome to my Website. My name is Michael Morale. I was born in 1965 and was raised in Dallas, Texas. My childhood was quite normal with regards to my development, but when I was a year old, my parents noticed that I wasn’t pulling up and trying to stand like most children. After consulting with numerous doctors, my parents were given the diagnosis of Muscular Dystrophy. The doctor looked at my mother and told her to take me home, enjoy what little time I had left and to start planning my funeral. I can only imagine the devastation that my parents felt hearing this news. Instead of getting weaker, I started crawling and pulling up and trying to stand, but with little success. My parents took me back to the doctors and they were unable to successfully diagnose what I had. They knew that it was a neuromuscular disease, but were unable to pinpoint exactly which disease I had until muscle biopsies could be taken when I was five years old. Since they were going to have to wait three years for this muscle biopsy, my parents admitted me to Scottish Rite Hospital when I was two years old. There, I learned how to walk with braces and crutches. The next three years of my life were as normal as possible. At the age of five, my parents admitted me back into the hospital so that doctors could take biopsies of the muscles in my left foot, leg and arm. Two weeks after the biopsies were taken and sent to the lab, the doctors notified my parents that the biopsies had been lost in transit and that they would have to go back in and take more muscle if my parents wanted a proper diagnosis. I never understood why they didn’t agree to do this until my father told me that the biopsies were very painful and he and my mother did not want to put me through the medical procedures again. We always wondered why these biopsies got lost in transit and the only thing that we could think of, was that the doctors were trying to protect each other from a malpractice lawsuit. As frustrating as this sounds, these were the decisions that my parents made and looking back on it now, I would’ve made the same decisions as they made.
I went to private school from the second through the sixth grade and then went to public school from junior high all the way through high school. After graduating from high school in 1984, I began my college education. I received my Bachelor's of Science in Business with a concentration in Management Information Systems in 1991 from the University of Texas at Dallas, and I received my MBA in Management in 2000 from Amber University. In 1991, four years before I began working on my MBA, I was approached by one of my former professors and was asked if I would be interested in teaching. After discussing this in great detail, I became an adjunct instructor for the Dallas County Community College District in 1992. During the next 13 years, I worked a full-time job with ExxonMobil Corporation during the day, then I would go and teach my college courses at night. The most rewarding job that I ever had in my life was teaching. When I retired from ExxonMobil in 2005, my night classes were switched to day classes and I continued teaching until 2010. Due to my disease, I was forced to go on permanent disability in 2010.
It wasn’t until 1998 that I found out the exact name of my disease. Scientists had located the gene that properly diagnosed me with Spinal Muscular Atrophy. After extensive blood work, and other genetic tests, I was informed that I had SMA Type 3. In February 2017, I learned about a new treatment that had been fast tracked through the FDA by a pharmaceutical company by the name of Biogen. The treatment that they developed was called Spinraza. As you follow my videos, you will learn the process that I had to take to become a candidate for this new treatment. My story will be ongoing and will continue for the rest of my life, so please join me in learning a little bit about this treatment and how this treatment could change millions of lives. My prayers are that this new treatment will allow me to gain muscle strength and become more independent in my daily life.
This website was created by smajourney51 and its developer, Michael P. Morale. The name smajourney51 and its corresponding logo are not to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51. No videos on the smajourney51.com website or the smajourney51 YouTube channel are to be used in any other website, YouTube channel or any other social media account without the express written consent of smajourney51. All links, videos, graphics, personal opinions and advice are meant for informational purposes only. Subscribers and followers to my website, YouTube channel, Facebook page, Twitter account and Instagram account should consult their personal physician for any medical advice. The information that I provide in the above listed social media sites are my own personal opinion, and should not be used by any of my subscribers and followers when making medical decisions.
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