Kandy Simons (@kandysimons) 's Twitter Profile
Kandy Simons

@kandysimons

ALS advocate. NurOwn Works and should already have FDA approval.

ID: 2159316247

calendar_today27-10-2013 17:37:15

4,4K Tweet

1,1K Followers

2,2K Following

Sheree Paolello WLWT (@shereewlwt) 's Twitter Profile Photo

RT: Today a committee with the U.S. FDA will hear about a drug called #NurOwn It’s not only helped ALS patients, for some it’s REVERSED the progression. Once you watch my story you'll see why so many ALS patients are desperate to have access to this drug💔 wlwt.com/article/asl-tr…

axeALSFoundation (@stevens_nation) 's Twitter Profile Photo

We are with you Sandra Abrevaya. If you don’t have ALS, stay the hell out of this debate. We are one of the few who can say that Eric had NurOwn in his body. He wants & needs more. Let that be his choice, not yours. Until you’re dying, we don’t wanna hear from you. Just stop.

Lorri Cavaliere (@lorricav) 's Twitter Profile Photo

To the few (real or alias) who ridicule, criticize, taunt and demean caregivers, advocates and pALS who want to live, I have a few comments and a question following: The reality is, @akjk, there are actually many pALS who choose to try and laugh every day. They choose to live

AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

Good news! We know #NurOwn works. We're confident that a P3b trial will validate the #RealWorldEvidence that patients & Dr. Windebank shared at the September AdCom. #NurOwnWorks #stemcells #ALS #EndALS ir.brainstorm-cell.com/2024-02-23-Bra…

Good news! 
We know #NurOwn works. 

We're confident that a P3b trial will validate the #RealWorldEvidence that patients & Dr. Windebank shared at the September AdCom.

#NurOwnWorks
#stemcells #ALS #EndALS

ir.brainstorm-cell.com/2024-02-23-Bra…
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

Too many young athletes being diagnosed with #ALS in their 20s & 30s, like Mater Dei Coach Rodriguez. abc7.com/mater-dei-high… He now joins young athletes like Eric Stevens, Kade Simons, Josh Smith, Matt Klingenberg, Ryan May, Coach Behan, Tyler Tidwell, Justin Rogers, Matt

Cesar Padilla, M.D. (@themillennialmd) 's Twitter Profile Photo

Had a medical emergency on a flight. Lessons learned from an OB anesthesiologist: 1. It’s helpful to carry your medical license / proof of being a physician. 2. You only get TWO (2) 22 gauge intravenous catheters! Not sure if this is standard. Pick your veins wisely. 3. You

Had a medical emergency on a flight. Lessons learned from an OB anesthesiologist: 

1. It’s helpful to carry your medical license / proof of being a physician.

2. You only get TWO (2) 22 gauge intravenous catheters! Not sure if this is standard. Pick your veins wisely.

3. You
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

More proof that #NurOwn works in #ALS! Biomarker paper published in Muscle & Nerve 🔹CSF samples taken 7x during 28 wk trial to analyze impact of 3 doses on 45 pre-specified #biomarkers 🔹3 biomarkers were predictive of clinical outcomes: 1️⃣ Galcetin-1 ...

More proof that #NurOwn works in #ALS!
Biomarker paper published in <a href="/MuscleAndNerve/">Muscle & Nerve</a> 

🔹CSF samples taken 7x during 28 wk trial to analyze  impact of 3 doses on 45 pre-specified #biomarkers

🔹3 biomarkers were predictive of clinical outcomes: 
          1️⃣  Galcetin-1 ...
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

Average person with #ALS loses 1 pt/mo in function on the ALSFRS-R scale. Before the 1st #NurOwn injection, this trial participant was a “fast progressor,” losing 1.43 pts/mo. After receiving NurOwn, this person almost immediately HALTED THEIR PROGRESSION -- consistent with the

Average person with #ALS loses 1 pt/mo in function on the ALSFRS-R scale. Before the 1st #NurOwn injection, this trial participant was a “fast progressor,” losing 1.43 pts/mo.

After receiving NurOwn, this person almost immediately HALTED THEIR PROGRESSION -- consistent with the
Mitchel Simons (@solosportsmgt) 's Twitter Profile Photo

It is with the deepest sadness that I say my oldest son Kade has passed away this morning in Vail, Colorado. He was the most beautiful and toughest person that I have ever known. It gives me peace to know that he is in a much better place and not suffering anymore.

Mitchel Simons (@solosportsmgt) 's Twitter Profile Photo

He passed so peacefully with Kandy and Kruz and my hands all on him in a beautiful place over looking the Vail mountains. He passed on his terms. He will be forever loved and missed. I can’t imagine going a day without him. I love you son.

AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

@catgyoung "Lives lost every month that we are delayed." Agreed. NIH funding must be restored immediately. But we also must stop blindly trusting the FDA and instead start asking how many lives are lost because of the delay caused by the FDA's Type II errors? Tragically, over 6,000

@catgyoung "Lives lost every month that we are delayed."
Agreed.  NIH funding must be restored immediately.

But we also must stop blindly trusting the FDA and instead start asking how many lives are lost because of the delay caused by the FDA's Type II errors?

Tragically, over 6,000
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

Anguished words from my dear friend Kandy Simons. Her 27 yr old son Kade died of #ALS because he couldn't get more of the #stemcell therapy that was helping him live. "We knew #NurOwn worked for Kade when he was in the trial in 2019. When the trial was unblinded in December

Anguished words from my dear friend <a href="/KandySimons/">Kandy Simons</a>.  Her 27 yr old son Kade died of #ALS because he couldn't get more of the #stemcell therapy that was helping him live.

"We knew #NurOwn worked for Kade when he was in the trial in 2019. When the trial was unblinded in December
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

"We are not data & numbers & spreadsheets. We are human beings with no hope to survive. #ALS is 100% fatal. If you have the power to change that, there should be no hesitation." ~ JamieRoseBerryy Delays have consequences. 💔Jamie died on November 9, 2022 -- without ever

AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

Brainstorm announced its 15 Phase 3B trial sites in US. ALS Trial called "ENDURANCE" clinicaltrials.gov/study/NCT06973… I know multiple people who HALTED their progression on #NurOwn in Phase 2, Phase 3A and EAP. It may not work on everyone, but it has given many people more time to

Brainstorm announced its 15 Phase 3B trial sites in US.
ALS Trial called "ENDURANCE" 
clinicaltrials.gov/study/NCT06973…

I know multiple people who HALTED their progression on #NurOwn in Phase 2, Phase 3A and EAP.  It may not work on everyone, but it has given many people more time to