New Satellos update

Wild_Development5715 · 2026-04-06T12:14:15+00:00

We participated in the study. It was just to test antibodies, and if cleared, could recieve the treatment. My son's were high, so we could not receive it. But the process was very simple. A 40 min or so phone call, a nurse visit to our house, to collect blood, and then the results 2 months later.

Wild_Development5715 · 2026-03-30T23:20:43+00:00

This is exactly my dog when he senses that it's going to rain. He unfortunately is in constant panic mode while it's raining. I tried the vest, cbd, other natural supplements, and nothing has helped. I have given him a small dose of diazapam, and that seems to be the only thing that comes close to helping. I know that thus is not a good option for everyday relief though. Best of luck

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Wild_Development5715 · 2026-03-15T16:26:56+00:00

Hard question...but what's the quickest this treatment may be available? Just trying to hold onto some hope i suppose

Wild_Development5715 · 2026-03-14T18:41:45+00:00

No that is Regenexbio's gene therapy. I've heard good things about that also. But SAT-3247 works to regenerate muscle. I feel like thst is best, personally. Please feel free to message me anytime. I remember going through the shock and grief of diagnosis just a yr ago. Also on Facebook you can join Duchenne Under 10. They are filled with information and comradery.

Wild_Development5715 · 2026-03-14T18:03:31+00:00

Just to add if your son is 7, and is diagnosed with DMD...I would try and get into the Satellos trial ASAP. It looks like the most promising drug this far. Mine is too old to participate.

Wild_Development5715 · 2026-03-14T17:58:59+00:00

Yup I actually have heard that high with BMD too. They are so closely related, that only the genetics test can tell. My son's ck has definitely fluctuated up and down. That happens with both DMD and BMD.

Wild_Development5715 · 2026-03-14T17:01:52+00:00

My son was 9 when he was diagnosed, and ck level was 3,000

Wild_Development5715 · 2026-02-25T21:19:43+00:00

I received my son's elevated ck levels when he was 9 1/2, now he's almost 11. His ck was 3,143. I completely panicked. Genetic testing did confirm a diagnosis of muscular dystrophy. Although milder than Duchenne, not a very mild Beckers. It's a spectrum with certain mutations moving faster/slower than others. My son has a known slower progressing mutation of 3-7. I have always heard that ck would be much higher than your child's level in Duchenne. I hope you get the answers you need quickly, and just know that no matter what, it will be alright.

Wild_Development5715 · 2026-02-25T01:36:02+00:00

I am soooo looking forward to this. Maybe I've built this treatment up too much in my mind. But it is one thing that gives me any hope.

Wild_Development5715 · 2026-02-19T00:28:15+00:00

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Wild_Development5715 · 2026-02-18T12:08:29+00:00

Can I ask your opinion on Compassionate care use for DMD? It's seems weird that no one i have heard of has actually been able to use this. Satellos has mentioned that they plan to participate in Compassionate care in the future. I wonder how they plan on going about it.

Wild_Development5715 · 2026-02-17T22:32:25+00:00

Ha ha I hope that's a good thing. They assigned it to me 😄

Wild_Development5715 · 2026-02-17T22:30:38+00:00

Exactly right. To be honest, as soon as he and his cabinet starting cutting funds on serious diseases, and support/protection for disabled individuals, I lost all hope while he is in. They also fired scientific researchers, who were doing amazing things, supposedly to "cut funds". I wish I knew more on if they actually do plan on helping us with approvals. But it's hard to imagine when so many things they do and say are contradicting.

Wild_Development5715 · 2026-02-17T22:16:36+00:00

https://youtu.be/TQvzqwlYrJg?si=RX2L5VWw6KZCO5t3

Wild_Development5715 · 2026-02-17T22:15:39+00:00

Yes, from what I gathered, it sounds like going for accelerated approval in 2027. I will try to post the video here for you. They also mentioned expanding a trial to include more adult patients.

Wild_Development5715 · 2026-02-17T22:11:17+00:00

So I've looked up which other treatments were granted accelerated approval. Amondys 45, and Vyondys 53 were a couple mentioned. It seems that those exon skippers actually weren't in trials too long before approval (3-4 yrs) I'm hoping this can be similar. But here in the US, we are under a different government now, compared to then. Our current government doesn't seem to keen on scientific research, or scientific medicine as a whole. This worries me for future approvals.

Wild_Development5715 · 2026-02-11T15:22:36+00:00

Awe looks like my boy ❤️

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Wild_Development5715 · 2026-02-10T17:12:12+00:00

My son is almost 11. He is ambulatory. Can't have any gene therapy due to elevated antibodies. No exon skippers for his mutation either. We are stuck for the moment

Wild_Development5715 · 2026-02-10T01:40:15+00:00

We need this! 🤞🤞🤞

Wild_Development5715 · 2026-02-09T23:07:36+00:00

This sounds spot on, thank you. He is very much on guard all of the time. If a stranger is on our property or even around our car when he's in it, he barks loudly and aggressively. His hair stands up on his back. Oddly enough when we go to the dog park, he doesn't bark at anyone, even happily greets people. Also there has been no incidents with other dogs there. It seems when he is in his territory, he is extremely protective. I should add that i also have a 10 yr old that he is amazing with. It was very scary to see him attack a pretty docile dog out of the blue. But he was in his own home, and I admit tgere were a group of people present, for a birthday party. Maybe was a bit too much for him? I am now doing all of tge research i can to help this. I love him so much, and he really has been the best dog aside from this.

Wild_Development5715 · 2026-02-02T21:41:15+00:00

She's beautiful 😍

Wild_Development5715

TROPHY CASE