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I discuss my feelings as to whether or not I feel that Spinraza has done me any good. 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.
I discuss the topic that is very important in my life. My belief in God is a subject that I’m not afraid to talk about. 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.
I discussed whether or not Spinraza should be considered a cure or a treatment. In my podcast, I give my opinion as to what I believe Spinraza should be considered.
In this week’s video, I answer a question that quite a few of you have asked me in the past, but until now, I felt uncomfortable answering. The question revolves around my reasons why I chose not to be an Ambassador for Biogen Pharmaceuticals. My reasons for not becoming an Ambassador were ones that I had to seriously consider, and I think after listening to my reasons, you’ll fully understand why I made the decision that I made.
We discuss how SMA patients in Ontario are granted wider access to Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how current treatments for SMA are giving those of us with the disease, a brighter and stronger future.
Michael Morale, discusses how patients with SMA Types 1, 2, & 3, options for Zolgensma exist, and more may be on the way. Also, Community Development Manager Kevin Schaefer reads from Angela Titcombe’s 31 Days of SMA story. Angela talks about being a teacher with SMA.
We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about diversity within the SMA community.
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.