Alka Vij

[Sandeep Verma (स्वर) @Sandeep_1966]

Concerted efforts needed starting from carrier testing for spinal muscular atrophy to new approaches for drugs and biologics for this rare genetic disorder. Meeting organised by Prof @sen_jonaki w/ @ICMRDELHI and @curesmaindia has strengthened our resolve for viable solutions.

[Tanavvi Viij @TanavviViij]

Day 1: It's time to hold @OfficialDMRC and @Secretary_MoHUA accountable. Fed up with being denied ramps, mistreated, and coerced onto trains. Join me in demanding change. #RampLagaoDhakkaNahi

[Tanavvi Viij @TanavviViij]

Day 2: Is it really "public" transport if it's only accessible to the able-bodied? Maybe it's time for @OfficialDMRC @Secretary_MoHUA to consider a name change to "Abled-Body Transport Only." #RampLagaoDhakkaNahi #AccessibilityForAll

[Tanavvi Viij @TanavviViij]

Day 3: Still no ramps, still no response from @OfficialDMRC If @Secretary_MoHUA can shamelessly ignore my rights, I'll shamelessly demand them. #RampLagaoDhakkaNahi #AccessibilityForAll

[Tanavvi Viij @TanavviViij]

Day 4: Still waiting for @OfficialDMRC's "Hi, any inconvenience is regretted" reply. Looks like my complaints are invisible to them. #RampLagaoDhakkaNahi #AccessibilityForAll

[Tanavvi Viij @TanavviViij]

Years of discomfort, mistreatment, and missed trains - all because @OfficialDMRC @Secretary_MoHUA fails to provide the promised ramps for wheelchair users. It's not just inconvenient; it's a blatant disregard for our rights. No more forced pushing,
#RampLagaoDhakkaNahi

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

Thank you @News24 for being the voice for our cause #BattleAgainstSMA 🙏
Dear @PMOIndia @nsitharaman
@AyushmanNHA
@MoHFW_INDIA requesting you to wave off GST from #Evrysdi, DCGI approved drug for patients of all ages. #Zolgensma #Evrysdi can save lives!
https://t.co/1wGVKN12ew

[Alpana Sharma @alpanaS16]

@Milan_reports @IndiaToday We @curesmaindia lost more than30 lives in last 6 months while waitin for d Govt support, there is a lifesaving medical available in our country but not accessible #Risdiplam can save lives. we d helpless parent hav to watch our children slowly wastin away in front of our eye

[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

[IndiaToday @IndiaToday]

India's battle against 'rare diseases'. Watch this report by @milan_reports.

#NewsToday with @Sardesairajdeep

[Moumita_SMA_Mom @MoumitaG_17]

#RareDisease #constitutionalright #right2health #Right2Life #everylifeprecious #Treatment4All #treatmentaccess #BattleAgainstSMA #Curesmaindia

[. Subhash kumar dhiman @Subhash44690696]

Respected
Shri.@jairamthakurbjp ji👏
#Spinal Muscular Atrophy The condition of children is deteriorating day by day Save the lives of children suffering from rare disease
You are our hope
#HealthForAll #right2health #AmritMahotsav #AzadiKaAmritMahotsav

[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 🙏

[Archana Vashist Panda @PandaVashist]

@Tahira3390 @ReheSamay Very true @Tahira3390.
This man @ReheSamay is making money out of this cheap level talks in the name of comedy and hurting sentiments of parents n children battling this draconian disease #SpinalMuscularAtrophy
B4 joking, take time 2 know n understand @curesmaindia

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
#Evrysdi is the only approved #SMA drug in India. Today's video shows post-treatment results in a few of our #SMAwarriors of different age groups. The medicine came into their lives as a life-saving miracle and we hope it reaches maximum SMA affected ASAP!

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Day 23: Today's #factsheet sums up the effects of physiotherapy on delaying the progression of disease. Exercises & training help #SMA patients improve & maintain mobility , prevent contractures & help maintain respiratory function.
#BattleAgainstSMA
#SMAckSMA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Today's article is on Neuromuscular facilitation for improving respiratory muscle function by well known neurophysiotherapist Dr. Shantanu Kumar De . Our heartfelt gratitude to Dr Shantanu for this amazing article.
#BattleAgainstSMA
#SMAckSMA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Today we are giving a video of our 7 yr old #SMArtWarrior Om Prakash from Tamil Nadu requesting government medicine for all Indian SMA warriors. Hope he gets medicine soon with other SMA patients in our CureSMA India family !
#BattleAgainstSMA
#SMAckSMA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Today's #SMArtWarrior (Type 3) is Keerthana from Bengaluru. Her parents share about her as someone who is interested in dancing and playing but can’t even go to school with #SMA. As she is receiving #Spinraza now through #SIPHAP ,they hope for a better future!

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

On this #FriendshipDay2022 , sharing a cute photograph of our #SMArtwarriors enjoying their therapy session together. We wish they remain #Friends forever ! Enjoying tiny moments of #BattleAgainstSMA .. #SMAckSMA with a smile 😊!
#SMAawarenessmonth