@smajourney51
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Michael Morale replied to the topic Excitement Surrounding Scholar Rock's SRK-015 in the forum The SMA News Today YouTube Channel 1 year, 7 months ago
Lupa –
You actually pose a very good question with regards to the data. Even though no formalized data has been released, Scholar Rock has mentioned on quite a few occasions about how muscle targeted therapies will help those of us with SMA.
All of us know that Spinraza and Evrysdi both work at the cellular level, and while there was a lot of…[Read more]
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Michael Morale posted a new activity comment 1 year, 9 months ago
Hey Alyssa – Like you, there are quite a few people that are on the fence regarding switching from Spinraza to Evrysdi. I myself have decided to go ahead and make this switch, because I’m 55 years old and I want to see if this daily oral treatment will do me better than a once every 4 month injection of Spinraza. I’m very happy with the results…[Read more]
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Michael Morale replied to the topic Michael’s Last Spinraza Injection in the forum The SMA News Today YouTube Channel 1 year, 10 months ago
Teri – I’ve never really heard of children suffering from seizures with regards to their Spinraza injections, but if your son didn’t have seizures before starting Spinraza, there may be a correlation.
I agree with Alyssa when she said that risdiplam will be going to a different part of the body. Since risdiplam is going to be an oral treatment,…[Read more]
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Michael Morale replied to the topic My COVID-19 Test Results in the forum Coronavirus (COVID-19) and SMA 1 year, 10 months ago
Lupa,
I’m glad that your procedure went well. It can be somewhat unnerving to be too close to people that have tested positive. When my caregiver dropped me off at the hospital, I had to have my mask on, and I had to go through 2 different checkpoints before I was admitted into the hospital itself.
When I got to the registration desk, they a…[Read more]
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Michael Morale replied to the topic My COVID-19 Test Results in the forum Coronavirus (COVID-19) and SMA 1 year, 10 months ago
Hey Alyssa,
Everything went well. I went into the hospital about 10:45 AM, and after the procedure was completed and I had one hour to lay on my back, I was released from the hospital around 3:30 PM CST.
Hope you’re doing well, and have a blessed day.
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Michael Morale started the topic My COVID-19 Test Results in the forum Coronavirus (COVID-19) and SMA 1 year, 10 months ago
On Friday, July 3, 2020, I had to go to UT Southwestern Medical Center in Dallas Texas to be tested for the COVID-19 virus. This test was mandatory before my next Spinraza injection scheduled for Monday, July 6, 2020.
6 hours after my test, I received notification that my results were in my UTSW Patient Portal. Even though I was relatively…[Read more]
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Michael Morale replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 10 months ago
I personally don’t think that this would be considered as receiving a combination therapy. You are correct when you say that this was one of the prerequisites, and the example that I gave you regarding the gentleman that I know that had been on Spinraza and then moved to risdiplam in January 2019 is an example of this.
I don’t believe that any of…[Read more]
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Michael Morale replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 10 months ago
Mike – I’ve never heard anything regarding a combination trial, and I personally don’t think that this would be an option during any clinical trial setting. I say this because during all clinical trials, the pharmaceutical companies are testing the efficacy and safety of a certain treatment that is trying to get approval from the FDA. I don…[Read more]
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Michael Morale replied to the topic Just Checking In in the forum Adults With SMA 1 year, 11 months ago
Crystal –
My name is Michael Morale, and I’m the Senior Director of Multi-Channel Content for SMA News Today, along with their parent company, BioNews Services.
I read your comments about the pain that you’re going through with regards to your buttocks and your tailbone. I wanted let you know that there are so many of us that are going through…[Read more]
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Michael Morale replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 11 months ago
Hi Mike – The NCT number that you gave, (NCT03032172), An Open-Label Study to Investigate the Safety, Tolerability, and Pharmacokinetics/Pharmacodynamics of RO7034067 in Adult and Pediatric Patients With Spinal Muscular Atrophy, is the Jewelfish trial that started back in January 2017.
If you go to http://www.clinicaltrials.gov and enter the NCT number…[Read more]
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Michael Morale replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 11 months ago
Lupa –
It’s probably been within the last 6 to 8 months that I started noticing some strength differences in my hands, and while I do believe that Spinraza has slowed the progression of my disease, it hasn’t stopped the progression totally. I’ve talked to other people who have said the same thing regarding their condition, and given that this…[Read more]
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Michael Morale replied to the topic Deciding to switch from Spinraza to risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 11 months ago
Derek –
I greatly appreciate you commenting on my video. My name is Michael Morale, and I’m the Senior Director of Multi Channel Content for SMA News Today, along with their parent company, BioNews Services
We just recorded a podcast where we did a roundtable discussion, and the subject of a combination therapy was brought up during this…[Read more]
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Michael Morale started the topic Start Talking To Your Doctors About risdiplam in the forum The SMA News Today YouTube Channel 2 years ago
Hey everyone! Hope you’re all doing well. Check out my latest video here.
In this episode of the Morale Monologue, I discuss the importance of talking to your doctors about risdiplam. This oral therapy is extremely promising for those of us with spinal muscular atrophy (SMA). Currently, we expect the FDA to m…[Read more]
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Michael Morale started the topic Differences between risdiplam and SRK-015 in the forum The SMA News Today YouTube Channel 2 years ago
Hey everyone! Hope you’re all staying safe and healthy out there.
Check out my latest YouTube video here. In this episode, I discuss key differences between two potential SMA treatments. The first is Roche and Genentech’s experimental therapy risdiplam, and the second is Scholar Rock’s therap…[Read more]
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Michael Morale started the topic FDA Asked for Newest risdiplam Data to Support Broad Label – Roche Says in the forum The SMA News Today YouTube Channel 2 years, 1 month ago
Hey everyone! Hope you’re all staying safe and healthy out there.
In this episode of the Morale Monologue, I discuss a recent decision by the FDA regarding Roche/Genentech’s experimental SMA therapy risdiplam. Recently, Roche/Genentech submitted additional data to the FDA to i…[Read more]
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Michael Morale started the topic Coronavirus: Tips and Tricks to Deal With Isolation in the forum The SMA News Today YouTube Channel 2 years, 1 month ago
In this episode of the Morale Monologue, I’m discussing how I’m dealing with life while trying to avoid the Coronavirus. I share some of the things that I’m doing regarding keeping myself occupied, and I also share some helpful tips on what you can do to keep from feeling so isolated during these…[Read more]
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Michael Morale started the topic The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times in the forum Flash Briefings and Podcasts 2 years, 1 month ago
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times.
Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now c…[Read more]
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Michael Morale started the topic Coronavirus: Tips and Trick For SMA Patients in the forum The SMA News Today YouTube Channel 2 years, 2 months ago
In this episode of the Morale Monologue, I’m discussing how those of us with SMA can stay safe during the Coronavirus (COVID19) concern. Those of us with SMA already have compromised immune systems in lower lung functions, and we need to be extremely careful over the next couple of m…[Read more]
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Michael Morale started the topic Scholar Rock and SRK 015 – EXCITING NEW POTENTIAL TREATMENT FOR SMA in the forum The SMA News Today YouTube Channel 2 years, 2 months ago
In this episode of the Morale Monologue, I’m discussing another biopharmaceutical company by the name of Scholar Rock, and their potential treatment known as SRK-015. I discuss how SRK-015 impacts our body, and how it differs from Spinraza, Zolgensma and risdiplam. While it may be over a year before this potential t…[Read more]
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Michael Morale started the topic Suggestions On How To Stay Safe in the forum Coronavirus (COVID-19) and SMA 2 years, 2 months ago
Over the past 10 days, we’ve all seen an unimaginable amount of information regarding the Coronavirus. While some are staying calm and being rational with regards to keeping themselves safe, some have gone to the store and began stockpiling for what they may think will be a six-month lock-in.
While doctors and researchers tell us that 80%…[Read more]
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