Saba Ahmad @SabSaba3
ALS Advocate Gurgaon India Joined August 2013-
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.@DrMakaryFDA @FDACBER @SecKennedy, It’s 71 days since we filed our #NUROWN Citizens' Petition For 156 years, ALS has had ZERO survivors Survival data have long been the gold standard for FDA approvals; and as Commissioner @MartyMakary has emphasized: "gold standard science and…
FIVE years ago today, the late @leedsrhinos legend ROB BURROW spoke to @sallynugent whilst on holiday with his lovely family. WE will forever be grateful to Rob for the dignity, humour and humility he showed whilst bravely battling #MND, raising phenomenal awareness and funds...
Researchers, dictors, Pharma, governments, ALS Associations and @US_FDA please hurry up. Get us a cure to beat #ALS . We need medicine in our bodies soon. Please save lives like @limpbroozkit & many more who are still alive #EndALS @aiims_newdelhi @PMOIndia @rashtrapatibhvn
Researchers, dictors, Pharma, governments, ALS Associations and @US_FDA please hurry up. Get us a cure to beat #ALS . We need medicine in our bodies soon. Please save lives like @limpbroozkit & many more who are still alive #EndALS @aiims_newdelhi @PMOIndia @rashtrapatibhvn
Today I want to say to those who fight the beast (ALS) God is present and protecting you There are many treatments under trial There are many people who love you, pray , and stand with you There is always hope Stand like a rock in the face of disease
#ALS is a death sentence . Why no clinical trials in India? Not a single trail to give hope to 75k plus cases in India who can contribute to find a cure . @aiims_newdelhi @DDNewslive @TargetALS_fdn @als_now @alsassociation @MoHFW_INDIA @JPNadda @rashtrapatibhvn
#ALS patients are the most neglected lot. No cure. In India no meds, even Riluzole approved is made available by @SunPharma_Live through CSR. Tofersen @biogen to treat SOD1 approved in 2023 is not available. No clinical trials. #ALS sucks @MoHFW_INDIA @JPNadda @aiims_newdelhi
Request FDA to please look into this urgently out of their busy schedule. ALS patients are dying waiting for the approval of #Nurown . Or let the community know if it will never get approved so that patient don’t pin their hopes #ALS #rightolive #endals
Request FDA to please look into this urgently out of their busy schedule. ALS patients are dying waiting for the approval of #Nurown . Or let the community know if it will never get approved so that patient don’t pin their hopes #ALS #rightolive #endals
Neuralink has been life changing for this man, and I believe it will be life changing for all of us with brain diseases. Technology like this and AI will change the landscape of medical research and development of treatments. #ALS fortune.com/2025/08/23/neu…
I’m 34. My mind is sharp. My body is failing. ALS doesn’t care about age, dreams, or plans — it just moves in and takes everything. Here’s what living with it is like. 🧵
The chamber of secrets has been opened
Dear @wesstreeting, Tofersen is life-saving, and free, yet around 20 people with SOD1 MND are being denied access to it. They do not have time to wait. You’ve got the power. Please use it. #PrescribeLife
Sharing my thoughts with @LeedsNews on the most beautiful Rob Burrow Centre for #MND @LeedsHospitals @LDShospcharity @RugbyLeeds @leedsrhinos - a big shout out to the public for walking shoulder to shoulder with us 🌺 gbr01.safelinks.protection.outlook.com/?url=https%3A%…
A group of Veer Naris and widows of fallen soldiers called on President Droupadi Murmu at Rashtrapati Bhavan. This interaction was organised by the Army Women’s Welfare Association.
Requesting Govt of India to approve Tofersen @biogen for SOD1 #ALS patients. #timeismeltingaway @aiims_newdelhi @MoHFW_INDIA @PMOIndia @DDNewslive @ZeeNews @ndtv @JPNadda @AnupriyaSPatel @alscasindia @TargetALS_fdn @alsadvocacy @mndassoc @mndcampaigns
Requesting Govt of India to approve Tofersen @biogen for SOD1 #ALS patients. #timeismeltingaway @aiims_newdelhi @MoHFW_INDIA @PMOIndia @DDNewslive @ZeeNews @ndtv @JPNadda @AnupriyaSPatel @alscasindia @TargetALS_fdn @alsadvocacy @mndassoc @mndcampaigns
It’s been more than 2 plus years that Tofersen @biogen has been approved by FDA to treat SOD1 #ALS but unfortunately not approved in India nor it’s available under EAP program. Hope for an approval @alscasindia @MoHFW_INDIA @CDSCO_INDIA_INF @JPNadda @DDNewslive @aiims_newdelhi
Indian parliament discussion be like …… We need Tofersen for treating SOD1 #ALS . Cure ALS @alscasindia @alsadvocacy @aiims_newdelhi @MoHFW_INDIA @CDSCO_INDIA_INF @JPNadda @AnupriyaSPatel @mndassoc @TargetALS_fdn @AgamJung @AshaEkHope
Indian parliament discussion be like …… We need Tofersen for treating SOD1 #ALS . Cure ALS @alscasindia @alsadvocacy @aiims_newdelhi @MoHFW_INDIA @CDSCO_INDIA_INF @JPNadda @AnupriyaSPatel @mndassoc @TargetALS_fdn @AgamJung @AshaEkHope
Urging indian government to approve Tofersen in India too. Make it accessible and affordable. People with SOD1 ALS don’t have time to wait. @CDSCO_INDIA_INF @MoHFW_INDIA @aiims_newdelhi @alscasindia @JPNadda @AnupriyaSPatel @PMOIndia @alsadvocacy @mndcampaigns
Urging indian government to approve Tofersen in India too. Make it accessible and affordable. People with SOD1 ALS don’t have time to wait. @CDSCO_INDIA_INF @MoHFW_INDIA @aiims_newdelhi @alscasindia @JPNadda @AnupriyaSPatel @PMOIndia @alsadvocacy @mndcampaigns
Thank you @DrMakaryFDA to talk about neuro degenerative diseases which needs attention. #ALS treatments need attention. Faster approval to save lives @MoHFW_INDIA @JPNadda @aiims_newdelhi
Thank you @DrMakaryFDA to talk about neuro degenerative diseases which needs attention. #ALS treatments need attention. Faster approval to save lives @MoHFW_INDIA @JPNadda @aiims_newdelhi
More than 75k patients of #ALS in India . Why no treatment yet? Why no research in India ? Why no hope? Why Tofersen for #SOD1 not approved here?Just like cancer treatment/therapies why can’t we have better facilities. @aiims_newdelhi @alscasindia @TargetALS_fdn @alsadvocacy
A Citizen Petition was submitted to the FDA requesting a new review of data supporting NurOwn®. We remain focused on advancing the ENDURANCE Phase 3b trial and exploring pathways that could bring meaningful options to people living with #ALS. Here: bit.ly/4nArET5
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