Saba Ahmad

ALS Advocate

[Target ALS @TargetALS_fdn]

Eric Dane joined our Board of Directors just a few months before he passed. He didn't have time to do the work he wanted to do with us.

But he chose us and fought for people living with ALS.

Eric's fight is our fight. In Eric's memory, go #ALLIN: https://t.co/aWzajzYxvT

[Target ALS @TargetALS_fdn]

Lou Gehrig was a Hall of Famer whose name became inseparable from #ALS, and whose legacy continues to drive our fight.

Join us as ballparks across the league pause to honor #LouGehrigsDay:

🏟️ Yankees: 6/2: https://t.co/QOWH03Xbeq

⚾ Mets: 6/10: https://t.co/TEAKBBlTFn

[Rain Consulting Group @RainConsulting]

.@PeterPitts was once critical of @BrainstormCell. He then looked at the science, the patients, and the unmet need and changed his mind.

At the same time, FDA leadership @FDA_KyleD @SecKennedy are taking a fresh look at how therapies for rare and fatal diseases should be evaluated.

Maybe the question isn’t whether the system should be more flexible.

Maybe the question is why ALS patients have had to wait so long for that flexibility to be applied. Thank you @hmac8

https://t.co/E7GxcfqoYF

[ALS/MND Alliance @ALSMNDAlliance]

💙 The ALS/MND Patient Fellows Program gives people living with ALS/MND, caregivers, and ALS/MND gene carriers the opportunity to participate directly in global scientific discussions.

📅 Application deadline: Friday, July 3, 2026

Learn more and apply: https://t.co/B53TuevLjB

[ALS Care & Support India @alscasindia]

💙ALSCAS Heroes | Story 07
Anandam Kakumani,the first graduate from his village in Nellore,dedicated his life to service, education, and helping others. After an ALS diagnosis in 2019, he faced every challenge with courage and resilience.
A journey of courage, kindness and hope.

[Saba Ahmad @SabSaba3]

@alsadvocacy Clinical trials can be extended to India . India has 1 lakh ALS patience but unfortunately no clinical trial

[Saba Ahmad @SabSaba3]

@mndassoc @mndcampaigns You are lucky to have so many facilities. India doesn’t have all this, no insurance coverage, no support , no clinical trials for ALS/MND . Everything is out of pocket from patients survival.

[ALS Care & Support India @alscasindia]

ALSCAS Heroes 💙| ALS Awareness Month
S. Narayana Rao, a mechanical engineer from Bengaluru whose ALS journey began in 2014. Despite challenges affecting mobility and speech, he continues forward with courage, supported by his loving family and the ALSCAS community.
Story 6💙

[I AM ALS @iamalsorg]

ALS steals too much — but it will never steal our determination, our urgency, or our drive. 💙

Volunteer. Advocate. Donate. Take action.

Get in, we’re ending ALS.

🔗 https://t.co/Rr7289T5cb

[Rain Consulting Group @RainConsulting]

ALS has no cure, but there are treatments that have halted progression and even improved function. One of them is #NurOwn. @kare11 you need to talk to Dr. Nathan Staff or Dr. Anthony Windebank at Mayo who testified first hand to the FDA about its benefits. There is a citizens petition up for approval right now with FDA. There have been over a million petition signatures worldwide and a record number of FDA docket testimonies written by patients, families, doctors, and caregivers in favor of the benefits.

Unfortunately, it has been over 316+ days with the FDA. Patients don’t have time to wait. ~ 5000 patients in the US alone have died , per the CDC ALS registry data, waiting for this treatment in those 316 days. It’s completely unacceptable when there is proven safety and efficacy across the totality of data.

[Target ALS @TargetALS_fdn]

Zero FDA-approved treatments exist to stop ALS. Current therapies only offer modest benefit or apply to a narrow group of those living with ALS. This is the gap we must close.

We’re #ALLIN until zero becomes many. Until #EveryoneLives.

Join us: https://t.co/QRvJ7pyfKV

[The ALS Association @alsassociation]

This week, Pope Leo XIV met with the Italian ALS Association (AISLA) and delivered a message that speaks to every person living with ALS, every caregiver, and every advocate in our community:

"You, as prophets, teach everyone the true value of life, and our world is in such need of this message!"

The ALS community offers the world lessons every single day: life is precious, no one should face illness alone, and acts of care and solidarity can change everything.

To every person in this community — people living with ALS, families, caregivers, researchers, health professionals, and volunteers — thank you for the grace you show every single day.
https://t.co/6Ps2nRJYVw

[Saba Ahmad @SabSaba3]

Hope India starts clinical trials one day #als @alscasindia @TargetALS_fdn @DDNewslive @aiims_newdelhi @PMOIndia @JPNadda @CDSCO_INDIA_INF

[ALS News Today @alsnewstoday]

EverythingALS has launched SAVA AI, a free online tool designed to instantly match ALS patients with eligible clinical trials. https://t.co/p3VyHKKB64

#ALS #ALSNewsToday #Bionews #ALSCommunity

[I AM ALS @iamalsorg]

Grateful to @PamBelluck and @nytimes for telling our community’s story and making ALS progress visible. THIS is progress—I AM ALS pushed for Tofersen, the FDA understood this need, and it paid off. We're keep pushing for therapies for ALL forms of ALS. 🔗: https://t.co/vkcAflFwZI

[Saba Ahmad @SabSaba3]

@alscasindia

[ALS News Today @alsnewstoday]

The FDA granted fast-track status to accelerate development of tazbentetol, Spinogenix’s experimental oral treatment for ALS https://t.co/3SdAISmZyQ

#ALS #ALSNewsToday #Bionews #ALSCommunity

[Target ALS @TargetALS_fdn]

Thank you to @Alnylam for being a silver-level sponsor for the Target ALS Annual Meeting! As the pioneer of the RNA interference (RNAi) revolution, Alnylam is focused on developing transformative therapies with the potential to prevent, halt, or reverse disease.

[The ALS Association @alsassociation]

Today, the New York Times is telling a story we've been fighting to make possible for two decades.
Qalsody, the first gene-specific treatment for ALS, is giving some people time they didn't think they'd have. It is also showing that it’s possible not to just slow down the progression of the disease but to recover some lost function.

In 2004, we took a chance and were the first to fund antisense technology research. This investment paved the way for development of Qalsody, the first ever gene-specific treatment approved for ALS. We fought alongside families calling for accelerated approval of Qalsody. And when insurance companies started calling this FDA-approved drug "experimental" and denying coverage, we didn't stop — we went directly to the Centers for Medicare and Medicaid Services and won a landmark directive requiring Medicare Advantage plans to cover it.
Qalsody is more than a drug. It’s hope made tangible.

For Cory Mosley, it means real hope of seeing his daughter finish high school — something he feared might never happen. For Stacey Kinsey and her daughter Shelby, a mother and daughter both living with SOD1 ALS, it means they both have hope they can hold onto together. And for Larry Falivena, it means more time with his family and more time serving as chair of the organization that invested in the treatment that is now helping him.

To be clear, Qalsody has not worked for everyone living with SOD1-ALS -- and only 2% of people living with ALS have the SOD1 gene. We are working for new treatments and cures for everyone living with ALS. That is why this victory, as profound as it is, only makes our work more urgent. We will continue to invest in promising new ALS research, advocate for people living with ALS at all levels, and ensure that everyone has access to expert ALS care.

Read the New York Times story: https://t.co/0GQ5fetmax

[ALS Care & Support India @alscasindia]

May is ALS Awareness Month 💙
Every voice matters. Every story counts. No one walks alone.
This May, we stand with the ALS community—raising awareness, sharing stories, and building understanding.
Honouring ALSCAS Heroes & sharing Knowledge Bytes all month.
Stay informed.

[Shah Minokadeh, M.D. @MinoShah]

1869: ALS identified. 100% fatal
Today: STILL 100% fatal

Lou Gehrig got 2 years. Eric Dane got just 10 months.

Cases are surging, yet @DrMakaryFDA @SecKennedy @VPrasadMDMPH ignore patients fighting for their lives

The NurOwn Citizen Petition is 50 DAYS OVERDUE. @FDACBER
Bureaucracy kills. @SenBillCassidy @RepGuthrie, it's time for accountability.

@realDonaldTrump @MartyMakary @RobertKennedyJr @ChuckGrassley @DrOz @DrOzCMS @RepGusBilirakis @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @BernieSanders @PattyMurray @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @SenRonJohnson

[Shah Minokadeh, M.D. @MinoShah]

.@realDonaldTrump gave @US_FDA a clear mandate: deliver cures/treatments to Americans

As a dying #ALS patient, I've watched @FDACBER blow >50 days past the deadline on the NurOwn Citizens Petition while we ALL die

@DrMakaryFDA @VPrasadMDMPH: Will your Big Pharma masters block you from reviewing the data & granting American cancer patients access?

@POTUS should fire you for this moral catastrophe

@BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @MartyMakary @SecKennedy @RobertKennedyJr @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @DrPatrick