AyaanshFightsSMA

Ayaansh is an SMA warrior and received 🧬Zolgensma at age 3 years+. (09/06/21)

[AyaanshFightsSMA @FightsSma]

Struggle of a lifetime and here we are! Yesterday, Ayaansh has been dosed for Zolgensma, the ₹16 Cr. drug we hve bn talkn abt all this while. He's stable & hopefully will improve from here. A big thank you to all our 65k donors for gvng a new life to my boy🙏 #savedayaanshgupta

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

Thanks so much @doctorsoumya ma'am 4 sparing time 2 meet @curesmaindia TN state coordinator Ms.Manopriya 2day.
V r very happy 2 present to u @curesmaindia Calendar made by paintings of our #SMArtWarriors battling #spinalmuscularatrophy. Thanks 4 yr compassion n support 🙏.

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

Patient & parent of @curesmaindia 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 @sardesairajdeep n @Milan_reports tks 4 raising plight of #RareDisease patients

[Alpana Sharma @alpanaS16]

Patient & parent @curesmaindia 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. @sardesairajdeep told @PandaVashist to get in touch wid u @Milan_reports #BattleAgainstSMA

[satish @satisht24]

@narendramodi @mansukhmandviya 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 @curesmaindia , #SAVE kids life

[Alpana Sharma @alpanaS16]

Patient & parent @curesmaindia 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 @sardesairajdeep thanks 4 being the voice of #RareDiseasePatients

[Alpana Sharma @alpanaS16]

@ChivateMangesh we d parent & patient of @curesmaindia request with folded hand to save our dyin Children suffering from #SpinalMuscularAtrophy Please help us in getting appointment - a listenin ear frm our Honourable @CMOMaharashtra @mieknathshinde

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#NovartisSupportCureSMAIndia
Heartfelt gratitude 2 @DubeAmitabh @saumil_mody @iyervaishali @aditiroybasu @NovartisIndia 4 meeting 2day with @curesmaindia @alpanaS16 2 understand patient's journey in #BattleAgainstSMA. Looking frd 2 working 2gether 4 Indian SMA community 🙏

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

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 !

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#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

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

We thank Govt.of Kerala @KeralaHealth 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

[Alpana Sharma @alpanaS16]

Our heartfelt gratitude to @pradyutbordoloi 🙏🏻🙏🏻 for givin d much needed voice & support for our patient & children sufferin & Dyin #RareDisease #SpinalMuscularAtrophy We @curesmaindia request @PMOIndia @narendramodi @nsitharaman @nsitharamanoffc 4 lifesavin drug #Evrysdi @Roche

[AyaanshFightsSMA @FightsSma]

@pradyutbordoloi @FinMinIndia Respected mam @nsitharaman @FinMinIndia, #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. @curesmaindia @Roche @PMOIndia @narendramodi

[Alpana Sharma @alpanaS16]

Request Hon’rable @FinMinIndia @nsitharaman @nsitharamanoffc 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_india

[satish @satisht24]

@pradyutbordoloi @FinMinIndia @narendramodi @nsitharamanoffc @GST_Council @Pharmadept @FinMinIndia @Roche @MoHFW_INDIA , Please help #SMA Community , kids are dying with out any help , there is medicine available which can save life but we need support from #Govt , #EveryLifePrecious Please Save #SMA kids