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Cure SMA Foundation of India

Cure SMA Foundation of India is a parent led community, initiated in January 2014 by a small group of parents of children suffering from Spinal Muscular Atrophy, a rare genetic degenerative, life threatening, crippling neuromuscular disease. Parents of SMA warriors  and adult SMA patients joined hands to raise awareness about the disease, building infrastructure for better management of the disease and advocating for broader access to available and approved treatment and clinical trials. In a few years, the community evolved, became incorporated and grew.

 

 

Cure SMA Foundation of India is a registered public charitable trust with pan India representation. Since the humble beginning of 10 families, we have grown to represent  SMA families and individuals across the country. Each year we support SMA families through our newly diagnosed care and counselling, resource pool, SMA camps and supportive services, patient advocacy and many other direct family support services. We are extensively working to empower SMA patients and enabling them to access existing services and facilities. We have augmented our effort  to bring the lifesaving SMA therapies to India.

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Guidelines for SMA in Covid 19 and beyond…..

CureSMAIndia Advisory on Covid-19 Vaccination for 18 n above.Hi everyone,

As you know that govt has now allowed Vaccination for ALL citizens above 18.
We received queries from few Parents to know how safe it is to go for vaccination in case of SMA.

Although we has asked this question on India Today News on 2nd March n shared response from Dr. Hemant Thakkar, Breach Candy Hospital, Mumbai and Dr. Guleria, Director, AIIMS Delhi and they suggested that we must go for vaccination in case of SMA (sharing that news video once again). However, today we also reached out to few of our known Doctors working with SMA patients very closely since last few years now and below are thier responses.

Response from:
Dr. Ankit Parakh, Pulmonologist New Delhi.

“We have no recommendations below 18 as of now.
Both brands are okay. Best is to vaccinate sooner than later”.

Response from:
Senior Adult Neurologist, SDN Medical College n hospital, Jodhpur.

“For SMA patients vaccination for covid is recommended. At this point in time, any of the vaccine can be given depending on availability because the transmission rate is very high and it will be devastating in SMA patients.”

Response from :
Pediatric Neurologist Dr. Ramesh Konaki, Rainbow Children’s Hospital, hyderabad.

“Sure, Covid vaccine can be given to those with SMA above 18 years age.
Any of the available vaccines are fine.”

Response from :
Dr. Kaushik Mondal, Geneticist, SGPGI Lucknow

“I think vaccination is a priority for such conditions..
Each centre is getting one vaccine.. and people should get vaccinated at the earliest in a nearby centre where Covid norms are maintained..
Choosing type of vaccine is not important. More important is how fast we vaccinate the community (as per norms)…”

Response from :
Dr. Renu Suthar, Pediatric Neurologist, PGI Chandigarh

“Yes .. children n adult with SMA should receive vaccinations for COVID-19. 2 doses about 6-12 weeks apart.”

Response from Dr. Ratna Puri, Sir Gangaram Hospital and Dr. Shefali Gulati, AIIMS Delhi is awaited as they said they will check n revert. But I think above responses are sufficient for us to understand that Vaccination Should be a Priority in case of SMA n we must try to get this for our 18 n above Warriors as soon as possible.

https://selfregistration.cowin.gov.in/

Please register here to get your vaccination dose ASAP. This portal works best in odd hours like early morning or late night when there’s less rush.

Mrs. Anjana Raj representated CureSMAIndia in “SMA Awareness-Ray of Hope ” event organised by Roche India with Dr. Siddhart Shah from Royal Institute of Child Neurosciences, Ahmedabad, Dr. Harshruti Shah from Rajvee Hospital and Ahmedabad, and Dr. Anand S. Iyer from Apollo Hospital, Ahmedabad & Neuro kids, Ahmedabad. It was immensely informative session for all parents, caregivers n Doctors. We are thankful to Roche for giving this opportunity to CureSMAIndia.


SMA-Roche

CureSMAIndia is pleased to announce 2nd Phase of Spinraza Individual Patient Humanitarian Access Program (SIPHAP) by US based NGO Direct Relief,* from 7th January 2021.
Program Duration: 7th Jan 2021 to 8th March 2021.
Program Details: Given below is the list of newly added Hospitals n centers in this 2nd phase in 2021. Also given is the inclusion n exclusion criteria, steps to be followed and contact details.
LIST OF NEW SIPHAP CENTERS IN INDIA :
1. PGI Chandigarh
2. Sir Gangaram Hospital, Delhi
3. Moulana Azad college n Hospital, Delhi
4. Peerless Hospital, Kolkata
5. Calcutta Medical College n Hospital, Kolkata
6. Nizam Hospital, Hyderabad
7. Rainbow Children Hospital,Hyderabad
8. Wadia Hospital, Mumbai
9. Nair Hospital, Mumbai
10. Indira Gandhi Hospital, Bangalore
11. CMC Vellore
12. Amruta Institute, Cochin
13. Deenanath Mangeshkar Hospital, Pune
EXISTING SIPHAP CENTERS IN INDIA SINCE JULY 2019:
1. AIIMS Delhi
2. SGPGI Lucknow
3. BAPTIST Hospital, Bangalore.
INCLUSION – EXCLUSION CRITERIA: Inclusion criteria:
SMA type 2 and 3 only.
1. Genetic Test Reports showing SMN 1 deletion.
2 Children who are sitters and less than or equal to 5 years age.
3. Any age BUT can can walk independently at least 10 steps with or without orthotic support.
4. Informed consent to be signed by patient /parents.
Exclusion criteria :
1. Those who are already on Zolgensma OR Risdipalm should not apply.
2. Those with severe scoliosis are excluded
3. Those on ventilator support are excluded.
4. Haematology n Liver function parameters are adequate, Doctors have all the details.
4. Those who have other neuro brain, siezure, spinal cord issues are excluded – details are with Doctors.
Steps to be followed by parents /patients /CureSMAIndia members:
1. Kindly check the Inclusion n exclusion criteria and assess whether your child is eligible or not.
2. If your child fits into inclusion criteria, then please call Neurologist /Geneticist from any of above 13 +3=16 nearest hospital nearest to your location n fix up an appointment.
3. Visit the hospital on the day of appointment taking ALL Covid19 Precautions and get your child’s evaluation completed.
4. Follow instructions from the Doctor strictly.
5. Please note that Doctors will only apply BUT selection will be done by MEC (Medical Exper Committee) in USA and thier decision will be final.
6. Please cooperate with Doctors and DO NOT RUSH.
7. Please DO NOT blame the Doctor if your child is NOT selected. Doctors can only apply for your child but they have no role in selection.
Contact details: Northern India: Archana Panda- 9377012135
Eastern India : Moumita Ghosh – 9432888613
Western n Central India : Alpana Sharma – 9727946303
Southern India: Dr. Razeena – 9446341617
CureSMAIndia is extremely happy to be part of Rare Disease Consultation “Together for Rare” in Eastern India along with PPHF, on 12th Dec 2020.

‘SMA Awareness Month, August 2020’

Cure SMA Foundation of India & Philips Present
Webinar on Respiratory Care in SMA

1st August 2020, Saturday, 7pm to 9pm.

‘CureSMAIndia partners with Roche India and SRCC Hospital, Mumbai on 8th Aug 2020’

Genentech Receives FDA Approval of Evrysdi (risdiplam) for the Treatment of SMA.
Genentech, a member of the Roche Group, today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for Evrysdi (risdiplam) to treat adults and children 2 months and older with spinal muscular atrophy (SMA).
https://www.instagram.com/p/CDms-G0JRPd/?igshid=1jizdeg8jdbvk

 

CureSMAIndia announces #SMArterTogether initiative. Within this initiative we plan to hold activities on engagement n involvement of #SMAWarriors and Caregivers throughout 2021. The first activity under this initiative we are starting with is “mental n emotional health wellbeing”.It’s true that all of us are busier than normal people owing to the extra time we spend on our/our child’s health. During this daily struggle, we often forget to breathe and take time to focus on our mental health.
However, it’s high time we talk about it and lend each other a helping hand to grow stronger, not just physically but mentally too.
Keeping this in mind, Cure SMA has designed this quick survey to understand your mental health needs.
We request you to kindly fill the form in the attached link and help us to plan some events accordingly.
Thanks in Advance.

https://docs.google.com/forms/d/e/1FAIpQLSd314nfMiOLkCj17rjui_3NrFWmZQNBMbMwdTzN9JhZdZIgzQ/viewform

CureSMAIndia family welcomes you to the first session of Bedhadak Bol on the theme – BEING ACCEPTED WITH SMA in our new initiative #SMArter_Together, an online discussion series.

So join us for our very first virtual meetup of Bedhadak Bol which deals with mental health issues and many more to follow.


 

Dear All,
On the occasion of Rare Disease Day, 28th Feb. 2021, we at CureSMA India are excited to invite you all to attend “All India SMA (SMArt) Update and Ray of Hope in 2021” in collaboration with *Indian Academy of Paediatrics supported by Roche .
The goal of this program is to spread SMA Awareness across All India.We are blessed to have renowned HCPs from across India as our Panelists.Our heartfelt Gratitude to esteemed Key Note Address Speakers Dr. V. K. Paul Member, Niti Ayog, Dr. A. K. Pradhan, DDC, CDCSO, Dr. Sunny Swarnkar DADG, DGHS – MOHFW, Dr. Aparna Mukherjee, ICMR and Dr. Piyush Gupta, President IAP for thier blessings & the encouragement 🙏🏼.
We wish to reach out to entire Indian SMA community of India and more than 32,000 pediatricians in India to spread awareness.

Please spread the word.

JOIN US LIVE ON

28th Feb 2021
3 PM to 6 PM (IST)/ 10.30 AM to 1.30 PM (CET)

Joining link:
https://diapindia.org/event-details.php?event=1009&title=All-India-SMA-(SMArt)-Update-and-Ray-of-Hope-in-2021

All India SMArt Update 28th Feb 3pm by CureSMA India

 

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