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My Weekly Journal – 05/20 Through 05/26
Monday, May 20, Through Sunday, May 26 – This had to be one of the most fulfilling weeks that I’ve had in the past 2 years. Not only did everything fall into place, but the FDA finally approved ZOLGENSMA from AveXis, as the 2nd FDA-approved treatment for those of us with spinal muscular atrophy. This historic announcement will dramatically improve the lives of thousands of children with SMA. We knew that the FDA would approve ZOLGENSMA for infants that were 9 months of age or younger with Type I SMA, but we also knew that AveXis had submitted additional data and information to the FDA in hopes that the FDA would broaden the label to include older children. When the announcement took place on Friday, May 24, 2019, the label said that ZOLGENSMA would be available to infants and toddlers up to the age of 2 years old, irregardless of the subtype of SMA they had. This incredible announcement basically turns a death sentence into a possible normal life for thousands of children around the world with spinal muscular atrophy. We are hopeful that ZOLGENSMA will be available to those of us who are older in the future, and while we believe that this will be the case, they still have quite a bit of testing to go through regarding those of us that are older.ZOLGENSMA will be administered intravenously to infants, and will be administered intrathecally to toddlers. Intravenous delivery of ZOLGENSMA to infants is possible because this treatment can get past the blood brain barrier in these little babies. The intrathecal delivery to toddlers will be administered directly into the central nervous system, similar to how we receive our Spinraza treatments. They chose to do intrathecal delivery for toddlers to ensure that there would not be a blood brain barrier problem. We are also thankful and blessed that this treatment has been passed through the FDA, and with the future of potential treatments being strong, our future is getting brighter each and every day.This past week, when I went for my workout with Emily, she and I worked on my core strengthening exercises. We not only used the resistance bands, we also did isometric exercises on my core muscles and my neck. The resistance bands and isometric exercises that we are doing has not only increased my core strength, it is also the key reason why I am able to work on my balance exercises every other week. Without a strong core, I would not be able to sit on the therapy table and improve my balance. This goes to prove that months of core strengthening exercises has paid off.If any of you reading my journal entries are thinking about working on your balance, make sure that you focus on your core strengthening first. With a strong core, your balance exercises will be much easier and you will find success much quicker than you would without strengthening your core first. Next week, Emily and Vicki will start with my balance exercises, and I will also be sitting on a cushion, which makes these exercises much more difficult. Sitting flat on the therapy table is not difficult for me to do now, so by sitting on this cushion, it not only throws my balance off, it forces my core muscles to work for longer periods of time. After my balance exercises, Emily will work on my range of motion and flexing exercises on my knees, legs, ankles, and feet. We will also be taking pictures while doing these balance exercises next week, because Emily will be producing her 2nd article for the SMA News Today HCP site. After Emily writes her article, she will send it to me and I will post it to the HCP site, along with the pictures, and a short video detailing my balance exercises. I will share the pictures with you next week on my website.I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go the flash briefings.I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you soon. -
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