Anjana @Anjana98385662
SMA mom eagerly waiting for a treatment Joined December 2018-
Tweets4K
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Gratitude to @iprdkerala for aiding 23 more children with #SMA (6-12 yrs) access Risdiplam! Deeply appreciate the initiatives including SMA clinic & skill development. KARE initiative is a true blessing. Heartfelt thanks to @CMOKerala and @VeenaGeorge03 #RareDisease #Gratitude
We r honoured 2 have Mr Vijay Garud, Managing Director, @Syniti, n Mr Srikanth, Director, HR, @Syniti join us in commemorating #RareDiseaseDay n supporting #SMArtWarriors Tku @Syniti 4 yr generous donation of medical equipment and motorised wheelchairs 2 SMA patients🙏.
Heartfelt gratitude to Kerala Chief minister @pinarayivijayan , @KeralaHealth @VeenaGeorge03 for officially announcing the scheme KARE: Kerala united Against RarE diseases. @iprdkerala 's free drug program for SMA and free scoliosis surgeries have saved many lives. Thank you🙏
Heartfelt gratitude 2 anonymous donar @vinodkumarmenon & @mid_day 4 coverin d plight of SMA patient We @curesmaindia r requestin 4 Govt support @CMOMaharashtra @Devendra_Office @Dev_Fadnavis @mieknathshinde @DrSEShinde please helpus save Akriti’s life 🙏🏻 mid-day.com/mumbai/mumbai-…
Thx @KolanuSailesh @VenkyMama @vboyanapalli @Nawazuddin_S @arya_offl @ShraddhaSrinath 4 highlighting #SpinalMuscularAtrophy in yr movie #Saindhav. U fulfilled yr promise 2 #SMA community during #Run4SMA Marathon in Aug 23'. V hope it'll help spread #SMA Awareness 🤞.
Thx @KolanuSailesh @VenkyMama @vboyanapalli @Nawazuddin_S @arya_offl @ShraddhaSrinath 4 highlighting #SpinalMuscularAtrophy in yr movie #Saindhav. U fulfilled yr promise 2 #SMA community during #Run4SMA Marathon in Aug 23'. V hope it'll help spread #SMA Awareness 🤞. https://t.co/WxvzIDX4mi
V’re extremely gr8ful 2 @KolanuSailesh, @vboyanapalli, @VenkyMama, @Nawazuddin_S, @arya_offl, @ShraddhaSrinath 4 highlighting d challenges of #SMA community in d movie #Saindhav 🙏. #SMA is a rare genetic disorder wid v.expensive drugs beyond d reach of any #SMA patient/parents.
@KolanuSailesh with @VenkyMama brought out the suffering of #SMA childn #India Hope @TelanganaCMO @PMOIndia @MoHFW_INDIA in reality facilitate the SMA children with the treatment time is running out #Risdiplam #spinraza #zolgensma @curesmaindia
@KolanuSailesh with @VenkyMama brought out the suffering of #SMA childn #India Hope @TelanganaCMO @PMOIndia @MoHFW_INDIA in reality facilitate the SMA children with the treatment time is running out #Risdiplam #spinraza #zolgensma @curesmaindia https://t.co/jq0AVWHS4s
Heartfelt gratitude @vinodkumarmenon & @mid_day 4 covering the plight of SMA patients We @curesmaindia r constantly requesting for Govt support @CMOMaharashtra @Devendra_Office @Dev_Fadnavis @mieknathshinde @DrSEShinde please help us save Akriti’s life 🙏🏻 mid-day.com/mumbai/mumbai-…
@chennaicorp @Udhaystalin anna please help me. I am a person with disablity with #spinalmuscularatrophy. Drainage water flooded our house in 184 Big Street, Chepauk. Toilet clogged. Unable to move out on wheelchair. #ChennaiFloods
On this #InternationaldayofPwD our #SMArtWarriors on ♿demand the society 2 look beyond what they see n accept the warriors as people n not liabilities! @narendramodi @MoHFW_INDIA @MinistryWCD @EduMinOfIndia @MSJEGOI @Roche @Novartis @NovartisGene @biogen @ScholarRock @biohaven
Heartfelt gratitude to @vinodkumarmenon @midday 4 coverin our #BattleAgainstSMA patients & parents @curesmaindia r requesting @CMOMaharashtra @Dev_Fadnavis @PMOIndia @narendramodi @MoHFW_INDIA to help us save precious lives #Risdiplam #Zolgensma #Spinraza
Thanks @dhawan_himanshi 4 highlightin d struggles of Rare Disease Parents We can’t give up - Our Battle Against these Gruesome Disease is ongoing as Children r being denied of Fundamental Right To Live @PMOIndia @narendramodi @MoHFW_INDIA @mansukhmandviya timesofindia.indiatimes.com/india/why-pare…
We are waiting for the government to hear our plight of saving the lives of these children @DrSEShinde @CMOMaharashtra @Dev_Fadnavis @MoHFW_INDIA @PMOIndia
We are waiting for the government to hear our plight of saving the lives of these children @DrSEShinde @CMOMaharashtra @Dev_Fadnavis @MoHFW_INDIA @PMOIndia
Thanks @dhawan_himanshi @TOIIndiaNews 4coverin d plight of Rare Disease Parent. Patient @curesmaindia r waitin 4 lifesavin treatment #Risdiplam #ZolgenSMA #Spinraza @OfficeOf_MM @Dev_Fadnavis @narendramodi @CMOMaharashtra @PMOIndia #SMApatient r dyin plz help #BattleAgainstSMA
Thank you @toi for covering the plight of Rare Disease community #Curesmaindia #BattleAgainstSMA
Thank you @toi for covering the plight of Rare Disease community #Curesmaindia #BattleAgainstSMA
Thank you @toi for this support in raising our voices. @ORDIndia @curesmaindia #RareDisease #policy #treatment #patients #parents #Caregivers
Where you live sudnt determine if you live, SMA has a definitive treatment our patients @curesmaindia r being denied fundamental right to live @ChivateMangesh @CMOMaharashtra @PMOIndia @narendramodi #BattleAgainstSMA mid-day.com/mumbai/mumbai-…
Heartfelt gratitude Honr’ble @RealBacchuKadu 🙏🏻🙏🏻 for listening to our plea. Patient @curesmaindia r waitin 4 lifesaving treatment #Risdiplam #ZolgenSMA #Spinraza , @OfficeOf_MM @narendramodi @CMOMaharashtra , @PMOIndia #SMApatient r dyin, please help us win #BattleAgainstSMA
Our sincere gratitude Honr’ble @dhangekarravi1 🙏🏻🙏🏻 listening to our plea. Patient @curesmaindia r waitin 4 lifesaving treatment #Risdiplam #ZolgenSMA #Spinraza , @OfficeOf_MM @narendramodi @DrBharatippawar, @PMOIndia #SMApatient r dyin, please help us win #BattleAgainstSMA
#SMAawarenessMonth Day 4: SMA is complex, & a multidisciplinary healthcare team plays a vital role in our care. From breathing to mobility,they support us in managing this rare disease. Let's appreciate their dedication! 🤝 #BattleAgainstSMA #RareDisease #TeamApproach #SMAcare
Alpana Sharma @alpanaS16
1K Followers 187 Following #RareDisease #PatientAdvocate #SpinalMuscularAtrophy, Co Founder Director CureSMA Foundation India @curesmaindia & Mom fightin 4 life saving treatment 4 son
Tahir Ahmad Arif @tahirarif57
592 Followers 353 Following
Mother of Sameer(Tahi.. @Tahira3390
563 Followers 1K Following Mother to an angel fighting the #BattleAgainstSMA in his memory| Android dev turned Teacher| Ahmadi muslim| Love for all, hatred for none| https://t.co/djzNLJKjy6
Subhash Kumar 🇮�.. @Subhash44690696
4K Followers 1K Following #Spinal_muscular_atrophy Fight India' Help india #SMA Rare diseases SMA free world 🌎 SMA free india 🇮🇳 एसएमए मुक्त भारत 🇮🇳 #raredisease #HealthForAll
SMA-Europe @SMAEurope
2K Followers 1K Following SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Prabhat Sinha @ThePksinha
2K Followers 1K Following Director- Public and Government Affairs - Boehringer Ingelheim India ( views personal)
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Abdu El @AbduEL26383
34 Followers 881 Following
xmbsoisjo51 @wzj891trud
2 Followers 247 Following If you want to make friends, you can contact me anytime TG：https://t.co/kIANP2pl5X WS：https://t.co/R1AJd0QiXj
232hif9hnes @gpg9vckpj450ti
0 Followers 345 Following If you want to make friends, you can contact me anytime TG：https://t.co/9gRFsgyfGl WS：https://t.co/vYJl9sSU4l
Lateefquraishi @lateef450
22 Followers 42 Following
minna @minnadillard
949 Followers 3K Following I lost my loving husband to ALS in 2016. I'm fighting for treatments that should have been available to him and NOW should be available to ALL ALS warriors.
Pushpa @amitpushpa1989
9 Followers 118 Following
Venkatesh Goud @Venkat4Nivansh
59 Followers 152 Following I am Venkat and my wife name is Usha, we both fighting for our son Nivansh( 8 months old) genetic disorder treatment. Please support and help.
Banty Thakur @bantythakur120
0 Followers 8 Following
Sangita Mondal @SangitaMon50617
12 Followers 111 Following
Keya Hatkar - I M Pos.. @keyabattlessma
49 Followers 163 Following 👧🏻Author💫YouTuber💫Podcaster💫Coder💫 Artist💫 Singer 💫https://t.co/NA2IwLTLn7 💫Book:https://t.co/lKvHzCNkwc 💫https://t.co/Ue9mpDFAiX
Nutan Patil @NutanPatilmm
0 Followers 5 Following
Vijay Kunsoth @VijayKunso11532
2 Followers 81 Following
RASHID M @RASHIDM13469
0 Followers 23 Following
Lynn Julian @lynnjulian007
4K Followers 4K Following Speaker l Author l Patient Advocate l Actress l Google Guide l Yelp Elite l Pop Superhero l Boston Marathon Attack Survivor #BEaHERO https://t.co/n2oCJxe1HN
Saranya S @saranya_s55536
0 Followers 21 Following
Shaikhah Aldossary .... @sensitive300
58 Followers 152 Following I listen to them but I do what I want..clinical nurse coordinator in KFSH-D ❤️ منسقه طبيه في برنامج ضمور العضلات الشوكي بالمملكه SMA
s s d @ssmarketing11
0 Followers 17 Following
Venkata Rao Kodimela @VenkataKodimela
8 Followers 41 Following
VINAY KUMAR @VINAYEVOX7090
1 Followers 49 Following
Vinay Kasera @vinaykasera77
80 Followers 128 Following
Tufan ka Deitya @TufanWalaDevta
17 Followers 58 Following
Rahul D. Kurmi @Rahul20532
1 Followers 14 Following
Dr. Tarek Baltaji @tarekbaltagi
169 Followers 535 Following General Pilot (retired), PhD Business Administration Lebanese University
Fighting For Kaiden F.. @F4Kaiden
12 Followers 34 Following We are a nonprofit foundation supporting the SMA (Spinal Muscular Atrophy) community. Through fundraising and grants, we supply equipment to those in need.
sanjeev @9sanjeevverma9
50 Followers 31 Following
ilinckbrands @Ora_kus
0 Followers 90 Following
Rohit Yadav @RohitRo40694723
12 Followers 202 Following
arvindan p @arvindan_p
1 Followers 8 Following
Krishnavtar @Krishna82461292
2 Followers 17 Following
ANIL PATNI @anilpatni
575 Followers 4K Following Public policy and corporate affairs pro. Global villager. Reader writer speaker thinker doer. Retweets not necessarily endorsements.
Sanjeev Singh @Sanjeev94589506
4 Followers 64 Following
Vaisakh KS Vallunni @Vaisakh_Comrade
217 Followers 922 Following Kerala - 01 Travel Lover Comrade, Atheist, Communist Party of India Marxist-Leninist CPIM Party Member, Vice-President @ DYFI Chruvaikal MC
Lipika Chakorbaty @iamlchakroborty
2 Followers 13 Following
Santoshi Korada @SantoshiKorada2
3 Followers 5 Following
Lubna Mohammad Ali Mo.. @LubnaMohammadA1
1 Followers 20 Following
Bhagyashree Bharadwaj @Bhagyas82147939
116 Followers 628 Following MD pediatrics,AIIMS, Jodhpur. IGICH-Bengaluru, DM SR Neo AIIMS Rishikesh
Pradeep kushwaha( म.. @Pradeep59446462
1K Followers 5K Following भारतीय जनता पार्टी बीना जिला सागर मध्य प्रदेश युवा कार्यकर्ता
TnPriya @RPriyaaa
21 Followers 68 Following My lifestyle Work Hard untill you reach your goal.Wherever it is necessary Say Thanks and Sorry. Love UR family and don't leave UR family members.
Alpana Sharma @alpanaS16
1K Followers 187 Following #RareDisease #PatientAdvocate #SpinalMuscularAtrophy, Co Founder Director CureSMA Foundation India @curesmaindia & Mom fightin 4 life saving treatment 4 son
Cure SMA Foundation o.. @curesmaindia
2K Followers 618 Following Making Spinal Muscular Atrophy treatment and cure accessible and affordable to Indians.
SMA News Today @SMANewsToday
2K Followers 11 Following We are a free digital publication dedicated to sharing the latest news, research, and spinal muscular atrophy (SMA) patient perspectives.
Archana Vashist Panda @PandaVashist
504 Followers 322 Following Spinal Muscular Atrophy Patients Advocate, Policy Reasearch & Advocacy 4 HealthCare, Regulatory Affairs, Accreditations- Social, Safety, Environment, Qlty
Tahir Ahmad Arif @tahirarif57
592 Followers 353 Following
Mother of Sameer(Tahi.. @Tahira3390
563 Followers 1K Following Mother to an angel fighting the #BattleAgainstSMA in his memory| Android dev turned Teacher| Ahmadi muslim| Love for all, hatred for none| https://t.co/djzNLJKjy6
Rustom Irani @TweetsbyRusty
240 Followers 51 Following Wheelchair user, TEDx speaker, Multi-format writer, filmmaker, video editor, inherent wise-ass.
Cure SMA @CureSMA
5K Followers 619 Following Funding groundbreaking research for SMA. Determined to find a cure & support our community as the future of SMA is ever-changing.
Subhash Kumar 🇮�.. @Subhash44690696
4K Followers 1K Following #Spinal_muscular_atrophy Fight India' Help india #SMA Rare diseases SMA free world 🌎 SMA free india 🇮🇳 एसएमए मुक्त भारत 🇮🇳 #raredisease #HealthForAll
SMA-Europe @SMAEurope
2K Followers 1K Following SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Prabhat Sinha @ThePksinha
2K Followers 1K Following Director- Public and Government Affairs - Boehringer Ingelheim India ( views personal)
Spinal Muscular Atrop.. @SMA_UK_
3K Followers 881 Following Supporting anyone living in the UK affected by Spinal Muscular Atrophy (SMA). On Twitter to raise awareness of the condition, our activity and related topics
ICMR @ICMRDELHI
340K Followers 183 Following We use Twitter as broadcast channel & don't reply on this handle. For any queries, Please share 'Feedback' on website or send email to [email protected]
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
DART INDIA @dartindia7
417 Followers 124 Following Dystrophy Annihilation Research Trust is an Parent founded NGO doing research and awareness programs with an objective to annihilate #musculardystrophy
TheFarahKhan @TheFarahKhan
6.7M Followers 0 Following Director, Producer, Choreographer, TV personality, but mainly, Mother of Triplets.
NHM Gujarat @NHMGujarat
13K Followers 492 Following This is the official twitter handle of National Health Mission (NHM) Gujarat
UNICEF @UNICEF
9.3M Followers 822 Following UNICEF works in over 190 countries and territories to protect children's rights. We won't stop, #ForEveryChild.
Sudarsan Pattnaik @sudarsansand
772K Followers 1K Following Official Twitter account of International Sand Artist & Padma Shri Awardee , #SudarsanPattnaik
Rajiv Kumar @RajivKumar1
89K Followers 662 Following Economist & Author | Former Vice Chairman NITI Aayog | Follower of Sahaja Yoga and fan of Sufi Music and enjoy all music. Views Personal
Shivraj Singh Chouhan.. @ChouhanShivraj
9.3M Followers 403 Following भाई और मामा | Former Chief Minister, Madhya Pradesh
Dr. S. Jaishankar (Mo.. @DrSJaishankar
3.1M Followers 12 Following External Affairs Minister of India. Member of Parliament (Rajya Sabha) from Gujarat State.
Pinarayi Vijayan @pinarayivijayan
1.1M Followers 24 Following Chief Minister of Kerala | Polit Bureau Member, Communist Party of India (Marxist)
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
United Nations @UN
16.5M Followers 1K Following Official account of the United Nations. For peace, dignity & equality on a healthy planet.
Devendra Fadnavis (Mo.. @Dev_Fadnavis
5.9M Followers 58 Following Deputy Chief Minister of Maharashtra ; RamSevak | KarSevak | Maharashtra’s Sevak रामसेवक । कारसेवक | महाराष्ट्र सेवक https://t.co/FqADu8Ujij
Manohar Lal (मो�.. @mlkhattar
2.4M Followers 482 Following Former Chief Minister of Haryana, Loksabha Candidate Karnal
IFPMA @IFPMA
9K Followers 1K Following We represent the innovative pharmaceutical industry, partnering for global health progress and access to innovation. #AlwaysInnovating #VaccinesForLife
Yogi Adityanath (म�.. @myogiadityanath
28.6M Followers 56 Following मुख्यमंत्री (उत्तर प्रदेश); गोरक्षपीठाधीश्वर, श्री गोरक्षपीठ; सदस्य, विधान सभा, उत्तर प्रदेश; पूर्व सांसद (लोकसभा-लगातार 5 बार) गोरखपुर, उत्तर प्रदेश
PPHF_Asia @PPHF_Asia
233 Followers 163 Following Transforming lives for improved health and wellbeing through locally-driven solutions
Dr Raman Singh @drramansingh
2.4M Followers 144 Following छत्तीसगढ़ महतारी का सेवक। विधायक, राजनांदगांव। विधानसभा अध्यक्ष, छत्तीसगढ़
Ministry of Social Ju.. @MSJEGOI
194K Followers 57 Following This is official twitter handle of Ministry of Social Justice & Empowerment
Science, Technology a.. @PrinSciAdvOff
33K Followers 147 Following Communications from the Office of Principal Scientific Adviser to GoI @PrinSciAdvGoI
Nidhi @nidhi_sharma
7K Followers 2K Following Journalist | Economic Times | World Press Institute fellow | Yoga enthusiast | Politics & Policy | Author of 'She, The Leader' https://t.co/6TQEV35BXk
Manish Sisodia @msisodia
3.4M Followers 331 Following This account is managed by Team Manish Sisodia.
Satyendar Jain @SatyendarJain
273K Followers 123 Following Minister of Health, Home, Power,PWD, Industries,Urban Development & Flood and Irrigation and Water. Govt of Delhi. MLA from Shakurbasti
Prof. Krishnamurthy V.. @SubramanianKri
66K Followers 197 Following Exec Director @IMFNews, 17th Chief Economic Adviser (2018-21), Prof @ISBedu (on leave), @IITKanpur @IIM_Calcutta @UChicago. Views are personal + RT≠Endorsement.
Capt.Amarinder Singh @capt_amarinder
1.2M Followers 77 Following Army Veteran | Former Chief Minister Punjab | Continuing to serve the State
Trevor Mundel @trevormundel
16K Followers 965 Following President of Global Health at the Bill & Melinda Gates Foundation. Science is my passion.
Taranjit Singh Sandhu.. @SandhuTaranjitS
81K Followers 36 Following BJP candidate for Amritsar Lok Sabha constituency. Former Ambassador of India to the United States / High Commissioner to Sri Lanka.
Chief Minister, MP @CMMadhyaPradesh
2.1M Followers 346 Following Official Administrative Handle of Chief Minister Office, Government of Madhya Pradesh.
CM of Karnataka @CMofKarnataka
1.6M Followers 163 Following Official Page of the Chief Minister's Office, Karnataka
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
UN Development @UNDP
1.9M Followers 2K Following Working to end poverty, inequality, and climate change and to advance the #GlobalGoals. Follow our Administrator @ASteiner and visit https://t.co/DDoyMVwB0I for more.
UN Human Rights @UNHumanRights
4.1M Followers 2K Following The United Nations #HumanRights office is led by High Commissioner @volker_turk. Follow us on FB, IG & Tiktok at unitednationshumanrights.
Dr Pradhyumansinh Rat.. @PradhyumansinhR
602 Followers 2K Following Manager - Projects, ECHO India. Gandhinagar , Gujarat. Public Health Specialist Views Strictly Personal RTs Retweet arent's endorsement
Sarbananda Sonowal (M.. @sarbanandsonwal
1.2M Followers 145 Following Minister of Ports, Shipping and Waterways, Minister of AYUSH, Government of India | Ex-CM, Assam
IISc Bangalore @iiscbangalore
177K Followers 73 Following The official Twitter account of the Indian Institute of Science (IISc)
CMO Kerala @CMOKerala
765K Followers 73 Following Updates from the Office of Chief Minister of Kerala, Shri. Pinarayi Vijayan
Our Odyssey @_OurOdyssey_
991 Followers 512 Following Connecting young adults impacted by a rare or chronic condition with social and emotional support in hope of improving quality of life. #ourodyssey
तैमूर क�.. @brijeshchaodhry
20K Followers 201 Following ।।श्री हरि।। 🚩🙏श्रीमद्भागवत गीता🙏🚩 पिताहमस्य जगतो माता धाता पितामहः । वेद्यं पवित्रमोङ्कार ऋक्साम यजुरेव च ॥9.17॥
Divyabhaskar @divyabhaskar
2K Followers 2 Following Keep yourself updated with India's news in gujarati language.
Biocon Biologics @BioconBiologics
4K Followers 170 Following Transforming Healthcare. Transforming Lives.
Harikrishnan E S @HarikrishnanES9
35 Followers 79 Following
Syed @asgaralisyed7
138 Followers 769 Following Please donate and share the link🙏 https://t.co/DvJYif5qL6 to contribute and share #supportarhaam https://t.co/X5Wd0PMDbvಜನರ ಆರೋಗ್ಯದ ಹಿತದೃಷ್ಟಿಯಿಂದ, ವಿರೋಧ ಪಕ್ಷ ನಡೆಸುತ್ತಿರುವ ಪಾದಯಾತ್ರೆ ಕೈಬಿಟ್ಟು, ಒಗ್ಗಟ್ಟಿನಿಂದ ಸಾಂಕ್ರಾಮಿಕ ಎದುರಿಸಲು ಮತ್ತು ಮುಂಬರುವ ದಿನಗಳಲ್ಲಿ ಮೇಕೆದಾಟು ಯೋಜನೆ ಅನುಷ್ಠಾನದ ನಿಟ್ಟಿನಲ್ಲಿ ಒಂದಾಗಿ ಮುನ್ನಡೆಯುವ ಕುರಿತಂತೆ ಮುಖ್ಯಮಂತ್ರಿ @BSBommai ಅವರಿಂದ ಮನವಿ;
We thank Dr Pramod K Sudarsan, Spine Surgeon & Dr Smilu Mohanlal, Ped. Neurologist of @AsterMIMS hospital, Kerala for their enlightening talk on 'Scoliosis in SMA' on 29th August, 2021 as part of #smaawarenessmonth .The webinar was absolutely enriching #ThankyouDoctors 🙏
Respected Shri Ratan N Tata Ji @RNTata2000👏 Chairman of Tata Trusts 600 children are suffering from #SMA save from #SMA drug #Risdiplam which is available in India because even after medicine is available we are losing children we can't buy it @curesmaindia
Importance of carrier screening: SMA is an inherited disorder, so if you have a family member who has SMA, it means that your risk of being a carrier is high. Carrier screening can tell you whether you are at risk of having a baby with SMA. #SMAfact #BattleAgainstSMA #SMAckSMA
Heartfelt gratitude to Dr. Mona Patel & Dr. RM Sundar Kumar for the most awaited webinar on Caring for Posture and Alignment in SMA on August 15,2021. Physical therapy & rehabilitation are increasingly relevant given recent advancements in treatment. #BattleAgainstSMA #SMAckSMA
#SMAAwarenessMonth Virtual Candle lighting event in memory of our lost angels on 14th August. We believe that our Angels are guiding us from above and leading us in right path 🙏 #BattleAgainstSMA
Today's #SMArtwarrior is Adilakshmi. Her delayed diagnosis, due to lack of awareness, caused a delay in disease specific management. #SMA is a disease in which early diagnosis and intervention is crucial to preserve neuronal function. #SMAawareness #SMAckSMA #BattleAgainstSMA
The first session of Regional SMA SOC (standard of care) webinar series was conducted on Saturday, 14th August, exclusively in Kannada, on : 1. Cardiopulmonary physiotherapy management 2. Nutrition management for SMA. Our sincere gratitude to Dr Gangai J. & Dr K.M.Manjunath🙏
Today's #SMArtWarrior is Javeria Khan from Telengana. Her mother narrates her painful 10 month journey of missed milestones to #SMA diagnosis. She mentions about 'Stem cell therapy' which claimed to cure, but only has worsened her daughter's condition. #BattleAgainstSMA #BeAware
@curesmaindia collaborated with Odisha IAP to organise an enriching webinar on Aug 9 as part of #SMAawarenessmonth. We are grateful to dignitaries of Odisha IAP, speakers Dr Sebaranjan Biswal, Dr Priyanshu Mathur, Dr Tapas Som & Dr Debasis Panigrahi for this informative session
Today's #SMArtwarrior is Rustom Irani, chief creative of Monie Plant Productions! He is a type 3 SMA warrior from Maharashtra. He walks us through his life, where disability was never an excuse. His attitude is an #inspiration to many at @curesmaindia #BattleAgainstSMA #SMAckSMA
#SMAfact : SMA does not affect sensory nerves or intellect, but it has been observed that many patients with #SMA are highly intelligent. Kids with SMA having higher functional independence are able to scan their surroundings for interesting targets. #SMAckSMA #BattleAgainstSMA
Our hearty wishes to Team of HCPs @AsterMIMS hospital, Calicut, Kerala for starting Mutidisciplinary Genetics and Neuromuscular Center today. We are sure our Kerala #SMArtwarriors would get maximum benefit from this clinic. Thank You 🙏
आदरणीय, श्री @narendramodi जी👏 कृपया #SMA सभी बच्चों को बचाया जाए खतरनाक बीमारी से जूझ रहे हैं कल का भविष्य है पहले भारत में कोई दवा स्वीकृत नहीं थी लेकिन अब एक दवा है #RESDIPLAM स्वीकृत इसलिए कृपया बच्चों की जान बचाएं @curesmaindia Help 600+बच्चे
As there are successful treatment options available for #SMA now, it is important to test as soon as it is suspected, if there is a family history or if parents are carriers. Earlier the treatment, better the preservation of motor function. #SMAfact #SMAckSMA #BattleAgainstSMA
Today's #SMArtwarrior is Harshada ,who had to face multiple challenges from the time of her birth. Her story shows how determination and hard work of the parents along with guidance from the experts can bring changes in the natural course of disease. #BattleAgainstSMA #SMAckSMA
We are grateful to @TChazhikadan Sir for giving our letter of representation to Hon’rable @mansukhmandviya @MoHFW_INDIA Indian #SMA patients are dying with each passing day. Approved drugs #Evrysdi #Zolgensma #Spinraza can save lives. #BattleAgainstSMA #SMAckSMA
Sharing story of Arunkumar & Yazhini today. #SMA affected 3 kids in their family. Arunkumar's younger brother had lost his #BattleAgainstSMA before his 1st b'day. This story shows higher chances of recurrence of SMA in successive pregnancies in carrier couples. #SMAckSMA #Gene
Today #SMArtwarrior is Ananthu. The story "The life of Ananthu" is given as viewed through the camera of Mr Solomon (Journalist, Asianet News) & how Ananthu's life changed when Solomon Sir gave the best of what he can,to support the family through the channel. #BattleAgainstSMA
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