Saba Ahmad

@alscasindia @DrRKDhamija @TargetALS_fdn @ORDIndia @JaisonVineeth @BioSpectrum True community care is to get treatment - Tofersen which approved by FDA in 2023 for SOD1 ALS patients. It’s approved in 40 countries but not in India 🇮🇳

10 years of community, care & strength 💙 Grateful to all our supporters, speakers & panelists who made this milestone meaningful. Special thanks to our esteemed guests for their insights on advancing ALS care and awareness. And thank you all contributors & their organisations.

@DrMakaryFDA @aVoice4ALS We should speed up with ALS drugs too

FDA is moving with unprecedented agility. Today we approved a multiple myeloma drug just 55 days after the application was filed. And last week’s approval (a major leap forward) was approved in 44 days. If a trial result shows immediate promise for many Americans, why wait?

@PMOIndia @narendramodi Please get Tofersen to treat SOD1 ALS approved in India . Make it accessible and affordable. It’s been approved by FDA but not in India yet even after 3years

We believe that healthcare should be accessible, available and affordable to all. Ayushman Bharat scheme is already fulfilling this vision for crores of families across India: PM @narendramodi

@ALSMNDAlliance Tofersen for SOD1 ALS approved by FDA but not available or approved in India

Now available: APPROVED TREATMENTS IN ALS/MND. This global conversation explores which therapies have received regulatory approval, how access differs in practice, and what barriers remain for people living with ALS/MND. Watch now and stay informed! youtube.com/watch?v=Bzqegi… 🎥

Rare diseases impact millions, yet most like ALS have minimal to no effective treatments. On this Rare Disease Day, we’re sharing facts about rare diseases and ALS to raise awareness and drive progress so #EveryoneLives. Donate to accelerate #ALSResearch ow.ly/MHf550YmeZL

Treating patients with rare diseases has an impact on your soul. That's why we're moving fast.

@DrMakaryFDA Please get a cure for ALS. So many patients are suffering without any treatment. Many lives cab be saved

@DrMakaryFDA Please get us a cure for #ALS soonest

Collectively, 30 million Americans have a rare disease. The problem isn't rare — it's a call to action.

When will we get Tofersen approved in India for SOD1 #ALS patients? Why so much delay? FDA approved it in 2023 @aiims_newdelhi @MoHFW_INDIA @vohglobal @JPNadda @PMOIndia @DDNewslive @TargetALS_fdn @AshaEkHope @ALSMNDAlliance @alsadvocacy

.@DrMakaryFDA @jim_traficant, I'm dying of #ALS—a 100% fatal sentence since 1869. NurOwn WORKS, but @FDACBER @VPrasadMDMPH delays cost lives NUROWN Citizens Petition deadline blown by >50 days HOW MANY MORE HAVE TO DIE @MartyMakary? Sickening to watch you pat yourselves on the back. You know very well that you have left ALL #ALS patients to die, while ignoring the NUROWN Citizens Petition that other ALS patients and I spent the limited time we have left painstakingly preparing. SUBMITTED JULY 3RD, 2025 @realDonaldTrump gave @US_FDA a clear mandate: deliver cures/treatments to Americans You have failed the #ALS community INCLUDING the military veterans who have a disproportionately high incidence of ALS. What do you say to the military families who have a 2-10X increased risk of developing #ALS, depending on military occupation? #MilitaryServiceRelatedALS Did you think that the mandate that @realDonaldTrump gave you didn't include military families? The global incidence of HORRIFIC 100% FATAL #ALS is expected to increase by 40% in the next decade. There is, and will continue to be, a lot of blood on your hands, Marty. @BillCassidy @RepGuthrie @DrOz @DrOzCMS @RepGusBilirakis @SenRonJohnson @ChuckGrassley @MartyMakary @SecKennedy @RobertKennedyJr @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @RepDebDingell @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis

@alsnewstoday Fed up to see these updates. Every therapy is taking so much time

Neflamapimod, an experimental oral therapy from Cervomed, has been selected for inclusion in the EXPERTS-ALS study. buff.ly/iySF1Jl #ALS #ALSNewsToday #Bionews #ALSCommunity

@RainConsulting @SecKennedy NurOwn could have saved his life. Wish it gets approved before more lives are gone

It’s time to approve the #NurOwn Citizens Petition. This treatment has extended life, stopped progression, and even helped patients regain function in #ALS. 2026 is the year this horrible disease goes from terminal to treatable! @SecKennedy

@vohglobal Raise voice for #ALS

Union Health Minister to launch the Tetanus and Adult Diphtheria (Td) Vaccine at the Central Research Institute, Kasauli — strengthening India’s commitment to immunisation, disease prevention, and public health security. Read More:- vohnetwork.com/news/policy/un… #Immunization

@BBCNews How many more lives? Don’t ALS patients deserve a cure. It’s been decades of struggle and people are just dying without any treatment

Grey's Anatomy star Eric Dane dies at 53 after ALS diagnosis bbc.in/4s2Eb3j

@SarahNauser You are blessed to have them

Fun Fact Friday!! These two have exactly 0 hours and 0 minutes of nursing experience or training but they have managed to keep me alive and extremely healthy, despite ALS of course, for the last 8 years. Meet my caregivers. My husband, Lonnie, and my mom, Jamie. Neither has ever had any kind of medical training other than basic CPR. Yet, I would trust either of them with my care more than most medical professionals. Crazy, right? They get me, they know me, and 9 times out 10 they know what I need before the words even come out of my mouth. It’s the most pure form of love I have ever experienced. We have navigated and adapted to every challenge and change along this journey together. Figuring it out our way. ALS is really, really hard but because of them it feels so much easier and possible. I am one of the lucky ones and I am beyond grateful and thankful for both of them. #ALS #FunFactFriday #FightLikeAGirl #SarahsSoldiers

@DeptHealthRes @MoHFW_INDIA @PMOIndia Please get a cure for #ALS #MND . Get Tofersen approved in India to cure SOD1 ALS

ICMR initiates human clinical trials for improved Kyasanur Forest Disease vaccine @MoHFW_INDIA @PMOIndia ndtv.com/health/icmr-be…

@iamalsorg Tofersen being so expensive , not everyone can afford. Also not approved in many countries. If it’s made easily available and affordable then usage volumes would increase across the world.

Thank you, Dr. Bedlack & I AM ALS advocate and volunteer Marvin Shaw, for walking us through the latest on promising ALS therapies! Tofersen is working well, but only for a few ALS patients. So we're pushing for progress to spread the hope. Full article @ bit.ly/ALShope

@alsnewstoday Other countries should also be included in EAP program

Half of the planned 200 ALS patients have joined Medicinova’s expanded access program evaluating the experimental drug MN-166. buff.ly/tJNiz0m #ALS #ALSNewsToday #Bionews #ALSCommunity

@MAHA_Action You are correct. When the cure are expensive then there will be no takers. What’s the point

NIH Director Dr. Jay Bhattacharya revealed we have a cure for sickle cell anemia. But it costs $3 million. “Did you know that we have a cure for sickle cell anemia?” “It’s NIH-funded research that did this.” “It costs $3 million for treatment.” “If it cost $3,000, there’d be no more sickle cell anemia.” “It’s a single gene problem.” “We’ve invested in cutting-edge science… but we haven’t invested in the things that actually make those huge advances available to the people of the world.” @maha_institute

@vohglobal No one is talking about ALS , a neuro degenerative disease . Please raise awareness. We need a Tofersen to be approved in India #ALS #MND

Union Health Minister JP Nadda launches new lung cancer care guidelines, strengthening India’s push towards early diagnosis, standardised treatment, and better patient outcomes ahead of World Cancer Day. Read more:- vohnetwork.com/news/policy/jp… #WorldCancerDay #LungCancer