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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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Latest News

Guidelines for SMA in Covid 19 and beyond…..
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

 

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