Thanks so much Soumya Swaminathan ma'am 4 sparing time 2 meet Cure SMA Foundation of India 🇮🇳 TN state coordinator Ms.Manopriya 2day.
V r very happy 2 present to u Cure SMA Foundation of India 🇮🇳 Calendar made by paintings of our #SMArtWarriors battling #spinalmuscularatrophy . Thanks 4 yr compassion n support 🙏.

Patient & parent of Cure SMA Foundation of India 🇮🇳 r livin r worst nightmare V've been requestin Govt 2 intervene as v r loosing precious lives despite n apprvd drug #Risdiplam available in India dat can save lives Rajdeep Sardesai n Milan Sharma tks 4 raising plight of #RareDisease patients

Patient & parent Cure SMA Foundation of India 🇮🇳 r livin d worst nightmare We hv been requestin 4 Govt intervention but r loosin precious live despite an approved therapy being available but not accessible. Rajdeep Sardesai told Archana Vashist Panda to get in touch wid u Milan Sharma #BattleAgainstSMA

Narendra Modi Dr Mansukh Mandaviya (मोदी का परिवार) Respected sir , we knocked all the possible doors to save #SpinalMuscularAtrophy kids , still living in a hope Govt will show mercy on us to save kids life, as medicines are available please save dying kids Cure SMA Foundation of India 🇮🇳 , #SAVE kids life

Patient & parent Cure SMA Foundation of India 🇮🇳 r livin r worst nightmare We hv been requestin 4 Govt intervention but r loosin precious live despite an approved therapy being available but not accessible #Risdiplam can save lives Rajdeep Sardesai thanks 4 being the voice of #RareDiseasePatients

MangeshChivate we d parent & patient of Cure SMA Foundation of India 🇮🇳 request with folded hand to save our dyin Children suffering from #SpinalMuscularAtrophy Please help us in getting appointment - a listenin ear frm our Honourable CMO Maharashtra Eknath Shinde - एकनाथ शिंदे

#NovartisSupportCureSMAIndia
Heartfelt gratitude 2 Amitabh Dube 😙𝓔𝓭𝔀𝓪𝓻𝓭🤟 vaisshali Aditi Basu Novartis India 4 meeting 2day with Cure SMA Foundation of India 🇮🇳 Alpana Sharma 2 understand patient's journey in #BattleAgainstSMA . Looking frd 2 working 2gether 4 Indian SMA community 🙏

#SMAawarenessMonth
Day 20: Today's factsheet creates general awareness on rehabilitation. To maintain functionality and to prevent contractures, rehabilitation measures are important for #SMAwarriors .
#BattleAgainstSMA
#SMAckSMA

#SMAawarenessMonth
Day 14: Today we are posting two fact sheets:
Sheet 1: On the need for a proactive approach & how to manage ambulant and non-ambulant cases
Sheet 2: Respiratory Home care methods
#BattleAgainstSMA
#SMAckSMA

#SMAawarenessMonth
Today we proudly present our Co-founder & Director Alpana Sharma's son Aarav(Type 2 #SMAwarrior )'s chest physiotherapy session. This video shows one of the best management in terms of proactive approach & adaptations to own home facilities!
#BattleAgainstSMA

#SMAawarenessMonth
#IndependenceDay
Day 15: Today's #factsheet is on SMA Quick facts & Frequently Asked Questions. The intention is to give maximum information related with SMA on a single sheet.
#BattleAgainstSMA
#IndependenceFromSMA
#SMAckSMA

CureSMA India wishes a very happy #IndependenceDay2022 #IndiaAt75 to one n ALL.
May every child/ patient get chance to live better quality of life n get access to life saving treatments. #BattleAgainstSMA #everylifeisprecious #everylifematters #Chance2Live #SupportCureSMAIndia

On this #IndependenceDay2022 , we remember our #SMArtwarriors who have left us fighting their #BattleAgainstSMA and also celebrate our calibre and spirit to fight this never ending battle to #SMAckSMA . Some of us got #SMAmedicines to ease this plight , some are still awaiting !

#SMAawarenessMonth
Today's #SMAwarrior is Deeksha Sampath from Bengaluru. In her words ' We might not be physically strong, but mentally we are super strong '. We are proud to introduce to the world such super-kids !
#BattleAgainstSMA
#SMAckSMA

#SMAawarenessMonth
Day 16: Today's factsheet is on the nutrition and gastrointestinal concerns - the risk factors & common issues. Swallowing difficulty, constipation, acid reflux are some of the common problems faced by #SMAwarriors .
#BattleAgainstSMA
#SMAckSMA

We thank Govt.of Kerala Dept. of Health & FW, Govt. of Kerala for conducting an elaborate screening for SMA patients at SAT Hospital, Trivandrum. The process was extremely smooth with the presence of trained and efficient doctors. We look forward to a day when #Treatment4All SMA patients can be achieved

Our heartfelt gratitude to Pradyut Bordoloi 🙏🏻🙏🏻 for givin d much needed voice & support for our patient & children sufferin & Dyin #RareDisease #SpinalMuscularAtrophy We Cure SMA Foundation of India 🇮🇳 request PMO India Narendra Modi Nirmala Sitharaman (Modi Ka Parivar) Nirmala Sitharaman (Modi Ka Parivar)offc 4 lifesavin drug #Evrysdi Roche

Pradyut Bordoloi Ministry of Finance Respected mam Nirmala Sitharaman (Modi Ka Parivar) Ministry of Finance, #Risdiplam is approved and available in India, sincere request to consider waiving of 12% GST as a first step to make this medicine more affordable to #SpinalMuscularAtrophy patient in India. Cure SMA Foundation of India 🇮🇳 Roche PMO India Narendra Modi

Request Hon’rable Ministry of Finance Nirmala Sitharaman (Modi Ka Parivar) Nirmala Sitharaman (Modi Ka Parivar)offc to full waiver of Custom duty ,GST & Cess of Roche drug #Evrysdi ,only approved treatment in India 4 SMA Full wavier ‘ll help brin down d cost of drug so that lives of SMA patient can be saved GST Council CBIC