Céline has Stiff-Person Syndrome

[Céline RO]

On 9/22/2026 at 10:40 AM, Alice said:

There has been a breakthrough in treatment. Celine's not cured, but the treatment is working and she improved spectacularly.

We have no information that Céline is part of any “breakthrough” treatment, only that she does the three standard therapies: pharmacological, medical and physical.

[Nmj]

I’m very skeptical that Celine has undergone CAR-T therapy for her SPS… and this week the results of the trial have had a YEAR of review.

Back in April, the big news was that miv-cel (KYV-101) produced impressive improvements at about 16 weeks in 26 people with difficult-to-treat SPS. What we didn’t know was whether that improvement would last.

Now we have the 12-month follow-up:

Median improvement on the 25-foot walking test was 46% at 16 weeks → 49% at one year.

95% of patients who initially achieved a clinically meaningful walking improvement still had that benefit at one year.

Of 12 patients who needed a walking aid before treatment, 8 (67%) still didn’t need one at one year.

92% were still off chronic SPS immunotherapy.

That’s the meaningful change. Durability was one of the giant unanswered questions, and the one-year results are encouraging.

The other change is regulatory. The FDA has already agreed that the single-arm 26-patient KYSA-8 study can support Kyverna’s application, and Kyverna has begun a rolling BLA submission. They’re currently targeting completion in Q4 2026 and seeking priority review.

So we’ve moved from:

2025: “Whoa, CAR-T might work for SPS.”
→ April 2026: “26-patient pivotal trial shows substantial improvement.”
→ September 2026: “Most of that improvement is still there a year later, and it’s heading toward FDA review.”

October 21–23. Kyverna says the full one-year SPS dataset, rather than just these topline numbers, will be presented at the ACTRIMS-ECTRIMS meeting in Toronto.

 

https://kyvernatx.gcs-web.com/news-releases/news-release-details/kyverna-therapeutics-reports-positive-one-year-data?utm_source=chatgpt.com

Edited September 28, 2026 at 11:39 AM by Nmj

[rfkavanagh]

Don't think there's anything new in this article, but nice to see the treatment breakthrough get some mainstream press attention:

https://www.theguardian.com/science/2026/nov/09/medical-breakthrough-offers-hope-to-people-with-same-stiff-person-syndrome-as-celine-dion

[lyn]

Looks like the underlying publication is new – https://jamanetwork.com/journals/jamaneurology/fullarticle/2856388

Before this they just had the headline results (https://www.neurology.org/doi/abs/10.1212/WNL.0000000000217905), but this now we have the full paper

[Dancing_Queen]

I wish she would update us on this. 

It was very clear in the documentary/interviews that she was very afraid that people would think she was faking her illness.

But right now, I feel like we're back at the point where people are questioning her again. 

And more importantly, I imagine other SPS patients have a lot of questions, too (she did say she wanted to advocate for them). 

How did she get so much better? And what does her prognosis currently look like?

She isn't obligated to share any of it. But if I were her manager, I would advise her to do at least one big  interview. Preferably give Québec the scoop.