ELLEN FIGHTS SMA🙅

Diagnosed SMA Type1 at 14 months old Received💉ZOLGENSMA🧬Gene Therapy at 23rd month on Aug 6th 2022. 👨‍👩‍👧Our Sincere Gratitude to all the Supporters👏

[ELLEN FIGHTS SMA🙅 @EllenFightsSMA_]

I'm happy to inform.
My Child Ellen Recieved free 💉Zolgensma 🧬gene therapy worth 💰16Cr on 6th Aug 2022, As a part of Novartis Managed access Program.
🙏My Sincere Gratitude to all the Supporters for all your🤲 Prayers for my Child & continue your prayers for her Recovery🤝

[Chiranjeevi Konidela @KChiruTweets]

Thank you Hon’ble Prime Minister Shri @narendramodi ji for this honor. 🙏🙏
It was indeed a privilege to be part of the Advisory Board for WAVES ( World Audio Visual Entertainment Summit ) and share my two cents along with other esteemed members.

I have no doubts that #WAVES, the brain child of Shri Modi ji will Propel India’s
‘SOFT POWER’
to its deserving heights in the world. Brace for all the Excitement and breaking new grounds very soon!! 🙏😍

[ELLEN FIGHTS SMA🙅 @EllenFightsSMA_]

@SonuSood Our Sincere Gratitude to you @SonuSood Sir 👏

[ELLEN FIGHTS SMA🙅 @EllenFightsSMA_]

Always thankful to Our Real Hero @SonuSood ,Sir👏
Ur message about my daughter Ellen reached million people & successfully she is infused with #Zolgensma drug and she is safe and recovering well & many thanks to the team @SoodFoundation @SonusoodBhanu @apparalaharishk @AnushaSp10

[ELLEN FIGHTS SMA🙅 @EllenFightsSMA_]

@PMOIndia @narendramodi Sir, Please take action and help Sma community @curesmaindia to save our little kids. 👏

[Alpana Sharma @alpanaS16]

A sordid tale of @BJP4India worker aRareDisease Father,committing Suicide with 2 son and wife. As family after family watches their children die awaiting treatment of #RareDisease - when will this nightmare end @curesmaindia has been knocking doors of @PMOIndia @narendramodi

[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
Today's #SMArtwarrior (Type 2) is Seba Salam, an artist blogger from Kerala. Bedridden after tracheostomy surgery in 2017, her spirit to fight & never give up is an inspiration to all! She wishes for #SMA treatment & rehabilitation facilities for all warriors.

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Day 31: Today's #factsheet highlights the urgent unmet need for the treatment of #SMAwarriors. As #SMA is a progressive disease- earlier the treatment,better would be the prognosis. A lot of families are waiting for the medicine to fight #BattleAgainstSMA !

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
In this video, #SMArtwarrior Amanya Pandey's mother from Mumbai shares her daughter's journey with #SMA from the start of symptoms to diagnosis, how she got to know about CureSMA India & selection in the #Spinraza access program.
@CMOMaharashtra @MoHFW_INDIA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
It's with great pleasure that we share about #SMArtwarrior Minha Sherin from Kerala. Her walking has gotten better ,that after #Spinraza drug, she started walking without support ! We wish her best & hope she continues to improve her abilities!
@KeralaHealth

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
We have patient experiences of 2 #SMArtwarriors : 4 yr old Rakshan from TamilNadu & 19 yr Sana from Kerala. Both are improving in all parameters with the right time access to #Spinraza .Their experiences prove that #SMA medicines are effective & life changing!

[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]

#SMAawarenessMonth
Day 19: Today's factsheet is on the three major determinants of quality of life in SMA : ability to breathe, swallow and move - how to assess and preserve them.
#BattleAgainstSMA
#SMAckSMA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Today's #SMAwarrior is Aditya from Tamil Nadu.His mother,Ms. Pushpavally narrates the struggles in raising an #SMA child as a single parent in poor circumstances. She is working in an iron mill,risking her life,to make the ends meet!
#BattleAgainstSMA
#SMAckSMA

[Cure SMA Foundation of India 🇮🇳 @curesmaindia]

#SMAawarenessMonth
Day 18: Today's #factsheet is on "Gastrointestinal dysfunctions in SMA". Gastric problems lead to serious complications and are the second most common cause of hospitalisation in SMA.
#BattleAgainstSMA
#SMAckSMA

[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]

#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
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