Céline has Stiff-Person Syndrome

[CelinesDIVO5]

Ya again I don’t see regression evident , rather I see a very serious condition being talked about. But I also see Celine’s determination and drive. I really don’t think it would be in good taste to update us on her condition on national awareness day for the disease. Because many are not well enough to even talk about it in front of a camera.

 

Agreed. It would be self serving, and Celine is far from that.

[KyleVan41]

 

 

Agreed. It would be self serving, and Celine is far from that.

 

Bingo.

[Nmj]

Ya again I don’t see regression evident , rather I see a very serious condition being talked about. But I also see Celine’s determination and drive. I really don’t think it would be in good taste to update us on her condition on national awareness day for the disease. Because many are not well enough to even talk about it in front of a camera.

 

 

Agreed. It would be self serving, and Celine is far from that.

 

I’m not necessarily saying they should’ve updated us on Celine’s health today of all days, but it should’ve been something( there hasn’t really been an update for a year). I’m not trying to be negative but I don’t think lack of information is necessarily a good thing. I hope they aren’t using the approach of “nothing has changed so means nothing to say”.

[KyleVan41]

She’s been recording - and Irene spoke to that. But it’s under tight lock. She could be busy in studio.

[Nmj]

She’s been recording - and Irene spoke to that. But it’s under tight lock. She could be busy in studio.

 

Where did I miss Irene saying that?! When? And do you have this?

[KyleVan41]

It was in a French interview she gave…a few months back . I don’t have the link but I read it when translated. Irene wouldn’t reveal much…

[RosieBarron]

It was in a French interview she gave…a few months back . I don’t have the link but I read it when translated. Irene wouldn’t reveal much…

 

You are right, it was definitely said. At this point I am happy for her to focus on recording rather than a Vegas show. It seems more viable and would just be amazing to have something from her.

[scielle]

Popped up on my LinkedIn feed: https://www.linkedin.com/posts/cuanschutz_dr-amanda-piquet-and-c%C3%A9line-dion-activity-7373388992643268608-nU8q?utm_medium=ios_app&rcm=ACoAACJiCYwB-47MTBpCCulV6F1MnadzZPTvqSI&utm_source=social_share_send&utm_campaign=copy_link

[KyleVan41]

“As a person that’s doing much much much better “

 

😃

[Nmj]

“As a person that’s doing much much much better “

 

😃

 

And thank God for that… However, this was been months ago around the time she posted that golf snippet video on her Instagram page. Also “much better”, is relative to what?! We don’t really know how bad it continued to be post documentary.

[mirage]

It's been a while since they posted this video.

Always thought there would be more of it.

 

Verstuurd vanaf mijn SM-F721B met Tapatalk

 

 

[scielle]

This is so, so sad: https://www.instagram.com/p/DUZV1S7ksLI/?igsh=MWw0Ync0cjc0dzNxcA==

I’ve followed Joey on IG ever since we found out about Céline’s SPS. Such a cruel reminder of how awful this disease can be.

[Nmj]

This is so, so sad: https://www.instagram.com/p/DUZV1S7ksLI/?igsh=MWw0Ync0cjc0dzNxcA==

I’ve followed Joey on IG ever since we found out about Céline’s SPS. Such a cruel reminder of how awful this disease can be.

 

So sad. I thought SPS isn’t fatal?

[scielle]

 

 

So sad. I thought SPS isn’t fatal?

 

I guess SPS in itself generally isn’t, but he had another complicating condition it seems.

[KyleVan41]

He also had another serious condition on top of that , sadly

[Nmj]

GREAT NEWS 🙏🏽

🚨 Celine’s doctor Amanda Piquet states there’s been a BREAKTHROUGH in SPS… 🚨 

She says she isn’t ready to use the term “cure” yet but she feels it could be case after long term studies. 

“Now we have a potential therapeutic that can be revolutionary for this disease,” Piquet said.

CAR T-cell therapy is a cancer treatment that’s been around for more than a decade. Now it’s been tweaked to address stiff-person syndrome by using a patient’s own cells to fight the autoimmune disease. T-cells are removed from the blood, sent to a lab, and flagged as targets for B-cells. The modulated cells are then infused back into the patient. 

“When you get those T-cells back, those T-cells are seek and destroy, so they deeply deplete your misbehaving B-cells and then once they do their job, your B-cells come back nice and healthy and basically reset the immune system, so you hopefully have a long-lasting, disease-free, therapy-free, in the end stiff-person syndrome,” Piquet said. 

Patients in the study who once struggled to walk due to muscle stiffness have experienced advancements in their health.

health.

“Sixteen weeks after the therapy, no walker, just walking down the hallway. We saw improvements by 46 percent in patients,” Piquet added. “So just incredible.”

The hope is that the treatment will be curative.

“I’m not ready to use the ‘C’ word yet. Time will tell. We need to study these patients long-term to understand the durability, but this is a very promising therapy,” Piquet added.  

 

https://wgntv.com/news/medical-watch/breakthrough-in-stiff-person-syndrome-research-funded-by-celine-dion/amp/

 

 

[Celine Fan 77]

On 5/14/2026 at 4:54 AM, Nmj said:

GREAT NEWS 🙏🏽

🚨 Celine’s doctor Amanda Piquet states there’s been a BREAKTHROUGH in SPS… 🚨 

She says she isn’t ready to use the term “cure” yet but she feels it could be case after long term studies. 

“Now we have a potential therapeutic that can be revolutionary for this disease,” Piquet said.

CAR T-cell therapy is a cancer treatment that’s been around for more than a decade. Now it’s been tweaked to address stiff-person syndrome by using a patient’s own cells to fight the autoimmune disease. T-cells are removed from the blood, sent to a lab, and flagged as targets for B-cells. The modulated cells are then infused back into the patient. 

“When you get those T-cells back, those T-cells are seek and destroy, so they deeply deplete your misbehaving B-cells and then once they do their job, your B-cells come back nice and healthy and basically reset the immune system, so you hopefully have a long-lasting, disease-free, therapy-free, in the end stiff-person syndrome,” Piquet said. 

Patients in the study who once struggled to walk due to muscle stiffness have experienced advancements in their health.

health.

“Sixteen weeks after the therapy, no walker, just walking down the hallway. We saw improvements by 46 percent in patients,” Piquet added. “So just incredible.”

The hope is that the treatment will be curative.

“I’m not ready to use the ‘C’ word yet. Time will tell. We need to study these patients long-term to understand the durability, but this is a very promising therapy,” Piquet added.  

 

https://wgntv.com/news/medical-watch/breakthrough-in-stiff-person-syndrome-research-funded-by-celine-dion/amp/

 

 

This made my day! Thanks for sharing this 😍

[Nmj]

On 5/13/2026 at 11:00 PM, Celine Fan 77 said:

This made my day! Thanks for sharing this 😍

I agree it’s fantastic news and hope for this terrible disease. It also may shed a little light on WHY Céline is the state to return since we have had little info on that. Amanda Piquet, her doctor says that Celine’s 2 million dollar donation is the BIG reason why this treatment has advanced. 
 

great great news in a world on fire it’s nice to read something positive. 

[Nmj]

There’s a video here that includes the interview with Celine’s doctor Amanda Piquet:

https://wgntv.com/news/medical-watch/breakthrough-in-stiff-person-syndrome-research-funded-by-celine-dion/

 

[Nmj]

More with Dr. Amanda Piquet:

NeurologyLive® sat down with Piquet at the conference to learn more about the findings. She reviewed the trial design and patient population, walked through the primary and secondary end point results, addressed the safety profile observed to date, and reflected on what these data mean for a patient community that has long been without approved treatment options.

NeurologyLive: Could you give some background context about what you presented?

Amanda Piquet, MD: I presented the phase 2 registrational single-arm clinical trial using miv-cel in SPS. Miv-cel is an antiCD19 CAR T-cell therapy. SPS is a rare autoimmune neurologic disorder that is progressive. We see patients with progressive stiffness and episodic muscle spasms. We are essentially using an autologous therapy, meaning a patient's own immune cells, their T-cells, to target their B-cells and cause an immune reset in order to treat the autoimmune disease.

Can you give an overview of the key data you presented?

This was a trial of 26 patients with SPS. All patients were refractory to at least 1 immune therapy. Our primary outcome measure was a 25 foot walk, or change from baseline to 16 weeks in the 25 foot walk. We looked at additional measures of secondary end points, including disability, disease-specific outcome measures, including the Distribution of Stiffness Index, as well as the Hypersensitivity Scale.

Our primary end point was the 25-foot walk. We saw a 46% median improvement in that 25-foot walk. Just to put that in perspective, an improvement that is considered clinically significant in the clinic is 20%, and we saw 46%. Additionally, 12 patients required walking assistance at baseline for the 25-foot walk, and at 16 weeks, 63% did not require assistance.

We also looked at measures of stiffness and disability using the modified Rankin Scale and the Hauser Ambulation Index (another scale for walking), and we saw improvements across all of those measures. Between the primary and secondary end points, 96% of patients had an improvement in at least 1 of those end points.

What are the big-picture implications you would want clinicians to take away from these findings?

Miv-cel demonstrated both efficacy and safety in SPS. We didn't see anything unexpected in terms of safety concerns—there was no high-risk cytokine release syndrome (CRS), there was no high-risk immune effector cell–associated neurotoxicity syndrome (ICANS). 

This was a highly effective therapy for patients just at Week 16. During the presentation, we showed videos of patients using a walker at baseline and essentially putting that walker aside and being able to walk quickly and normally down the hallway. It was just incredible to see that outcome. We just don't see that with our current off-label use of therapies in this disease today. I think this trial is pivotal, and the results are unprecedented—and it's going to be incredible for the SPS community.

Are there unanswered questions or areas of interest for further research?

What I presented was the 16-week primary outcome. The data cutoff was the end of November of last year, so the follow-up went out to 6.5 months. The total trial is 12 months, so it's going to be important to see the longer-term data come out, and we'll be following the durability of this response.

Is there anything else you want to add?

Let me just go through SPS some more. This is a chronic autoimmune disease and this is a disease that progresses. Patients have walking problems because of their stiffness and because of these episodic muscle spasms. As of today, we have no FDA-approved therapies for this disease and so oftentimes we're reaching for something called IVIG, which is used off-label.

We also had the opportunity at AAN to present on some natural history data, as well—a multicenter study with myself and Scott Newsome, DO, at Johns Hopkins. This is one of the largest datasets that we have for natural history data, and it really looked at what we see with the 25-foot walk, as well as disability, really demonstrating both the progressiveness of this disease and the ineffectiveness of our current therapies.

 

https://www.neurologylive.com/view/assessing-car-t-miv-cel-stiff-person-syndrome

Edited May 14, 2026 at 02:55 PM by Nmj

[scielle]

How absolutely mind-boggling to go from the convos I this thread a few years back, to this - 

How I wish I had an ounce of her drive and determination. Truly something to behold.

 

 

[Alice]

This is like the most beautiful dream come true. For Celine and for us. And hope for other persons with SPS.

[Your_Su_Phu]

I’m so interested in the idiosyncrasies of how SPS affects singing. I know that singing, particularly belting, requires careful coordination of many different  systems. It seems possible to me that one reason Céline has retained relatively good access to her head voice is that producing it may demand a somewhat different pattern of muscular coordination than the chest-dominant, high-intensity singing she relied on throughout her pop career. Perhaps even now, using her head voice places less strain on the particular parts of her system that SPS affects most severely than sustained chest voice or belting does.

Edited September 14, 2026 at 09:47 AM by Your_Su_Phu

[Ajax]

On 9/14/2026 at 11:46 AM, Your_Su_Phu said:

I’m so interested in the idiosyncrasies of how SPS affects singing. I know that singing, particularly belting, requires careful coordination of many different  systems. It seems possible to me that one reason Céline has retained relatively good access to her head voice is that producing it may demand a somewhat different pattern of muscular coordination than the chest-dominant, high-intensity singing she relied on throughout her pop career. Perhaps even now, using her head voice places less strain on the particular parts of her system that SPS affects most severely than sustained chest voice or belting does.

Clearly, SPS appears to have significantly altered the entire system and the mechanisms that support her chest voice. Much less so her head voice.
 

[scielle]

A very important point being made here. So much of the coverage of the last few days has glazed over the fact she still has a disabling condition. 

 https://www.instagram.com/p/DdbZAbMjnd7/?img_index=9&stkn=cXp6d2pmNHdodTN6

 

[Dancing_Queen]

Duolingo France made a cute post about Céline 😊 

https://www.instagram.com/p/Ddb7BH9iny9/?stkn=MjV3eTQ2bnRhdWlj

Her cultural impact 😍 

[Dancing_Queen]

^^ Sorry, that was definitely posted in the wrong thread. Mods, can you move/remove? 

[Céline RO]

On 9/19/2026 at 10:38 AM, Dancing_Queen said:

Duolingo France made a cute post about Céline 😊 

https://www.instagram.com/p/Ddb7BH9iny9/?stkn=MjV3eTQ2bnRhdWlj

Her cultural impact 😍 

Is the audio from the SPS announcement video? It’s haunting, I can’t listen to it.

[kellyfan161]

I know we don’t know the answer, but with other patients insights we might… I know there is no cure, but with Celine performing again, and she seems healthy & well, I wonder  if her symptoms are managed very well and she gets along fine, and I wonder how???  (Because from my research it seems like a debilitating condition)

Edited September 22, 2026 at 01:40 AM by kellyfan161

[Alice]

On 9/22/2026 at 3:38 AM, kellyfan161 said:

I know we don’t know the answer, but with other patients insights we might… I know there is no cure, but with Celine performing again, and she seems healthy & well, I wonder  if her symptoms are managed very well and she gets along fine, and I wonder how???  (Because from my research it seems like a debilitating condition)

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