IF & SBF 28th International Conference on Spina Bifida and Hydrocephalus

  • 10 Aug - 12 Aug, 2018
  • Le Meridien, New Delhi, India

Programme


Time Topics Facilitator Photos
9.00 – 9.15
Opening remark on joint session : WHO, CDC, IF

Mr. Lieven Bauwens
Secretary General, IF ( Belgium)

Dr. Neena Raina
Regional Advisor Child and Adolescent Health at World Health Organization

Dr. Coleen Boyle
PhD, MSHyg
Director, NCBDDD, CDC

9.15 - 10.30

09:15 - 09:30

Session 1: Face to face with birth defects
- Born with SB, becoming a doctor and onto becoming President of IF

Dr. Margo Whiteford
Clinical Geneticist
President – IFSBH Scotland, UK

09:30 - 09:45

- Parenting a child with Birth defects
& About the Work of Child help

Mr. Pierre Mertens
Dire.Child-Help International Belgium



Ms. Janet Manoni
Regional Coordinator –Child Help International

09:45 - 10:00

- The story of Fetal Surgery for Birth Defects

Dr. Mohan Abraham
Prof.Ped. Surgery,
Amrita institute of medical sciences, Kochi

10:00 - 10:10

Role of National Associations & Support Groups in the care of BDs
( NTDs)

Ms. Elena Zappoli
Prof. Elena M. de Záppoli Presidenta APEBI

10:10 - 10:20

The making of a swimming champion

Parth Hendre & Family
National level Paralympic swimmer, Mumbai, India




Chairperson : Dr. Neena Raina

   Dr. Santosh Karmarkar

Time Topics Facilitator Photos
11:00 - 11:10 An Update of Regional Overview of NTDs in SEAR

Dr. Neena Raina
Regional Advisor Child and Adolescent Health at World Health Organization

11.10 - 11:30 How big is the Epidemic in your country fortifying the World against Spina Bifida & anencephaly Prof Godfrey Oakley
Director, Center for Spina Bifida Prevention Emory University, USA
11:30 - 11:45 Evidence for the gross underestimation of folate deficiency in developing countries Dr. Asok Antony
MD, MACP
Chancellor's Professor of Medicine,
Indiana University School of Medicine Indianapolis,
11:45 - 11:55 The real Incidence and Prevalence of NTDs in India Dr. Anita Kar
Professor & Director School of Health Sciences University of Pune, India
11:55 - 12:05 Impact of Prevention and its cost effectiveness – in India Ms. Vijaya Kancherla
Research Assistant Professor, Department of Epidemiology Epidemiologist, Center for Spina Bifida Prevention,Emory University,
12:05 - 12:20 Preventing Birth Defects in Maharashtra - The way forward. Dr. Sanjeev Kumar
Director
National Health Mission Maharashtra, India



  Topics Facilitator Photos
 

Panel Discussion : Multiple Dimension in addressing birth defects:

Moderated by
Dr. Santosh Karmarkar
  • WHO SEARO
Dr. Neena Raina
Regional Advisor Child and Adolescent Health at World Health Organization
  • CDC
Dr. Colleen Boyle
PhD, MSHyg
Director, NCBDDD, CDC
  • Medical Professionals : Diagnostics and Clinicians
Dr. Yogesh Sarin
Director Professor &
Head of Department of Pediatric Surgery, Maulana Azad Medical College.
Dr. Ravindra Vora
Pediatric Surgeon, Sangli, India
  • Nutritionist
Mr. Rohit Shelataker
Nutrition Expert, Vice President – Meyer Vitabiotics
  • Fortification Experts GAIN
Dr. Ajit Chakrabarty
Senior project Manager at Global Alliance for improved Nutrition (GAIN)
  • Parents Group
Mr. Sudhakar
Vice President of Kotak Mahindra Bank, Mumbai, India
  • Video
Dr Mackensie Yore, USA
Standford University School of Medicine, USA
Health Ministry In-charge MCH Dr. Ajay Khera
Deputy Commissioner for the Child Health Program at the Ministry of Health & Family Welfare, Government of India
15.00 - 15.30 Delegates move to respective sessions of WHO and IF    

Chairperson : Mr. Sudhakar

  TOPIC SPEAKER PHOTO
  Welcome & Introduction Mr. Lieven Bauwens
Secretary General, IF,
Member – Child Help ( Belgium)
    Mr. Sudhakar
Vice President of Kotak Mahindra Bank, Mumbai, India
  Making of a Swimming champion…! Ms. Merlyn D’Mello and Family
National level Paralympic swimmer
  Panel Discussion

How to Prevent and detect a birth defect

• Dr. Shama Batra
Delhi


• Ms. Uma Kalekar
Director Meyer Organics,India
The Saptapadi -7 steps Campaign

  Urinary Incontinence No Worries Dr. Santosh Karmarkar
Consultant Pediatric Surgeon
Lilavati Hospital, Mumbai,
Founder trustee - Spina Bifida
Foundation, Mumbai , India
  The usual dilemma - more children after one child with SB? Yes - Mr.T.V.Sudhakr
Vice President Kotak Mahindra Bank, Mumbai India

No – Ms.Amita Bapat
German Language Teacher, Mumbai, India


  Urinary Incontinence No Worries Dr. Santosh Karmarkar
Consultant Pediatric Surgeon Lilavati Hospital , Mumbai , Founder trustee - Spina Bifida Foundation, Mumbai , India
Advocacy, Coalitions, and Our Voice Powerful advocacy voice for disability rights, accessibility, and independence Mr. David Morrissey
International disability program consultant, executive director of U.S. International Council on Disabilities (USICD) in Washington, DC from 2009 to 2017.



Chairperson : Mr. Cato Lie

TOPIC SPEAKER CHAIR
Shining Like an Emerald.!!! Ambassador Zambia
Early assessment, Prognostication and Counselling Dr. Santosh Karmarkar
Consultant Pediatric Surgeon
Lilavati Hospital Mumbai ,
Founder trustee - Spina
Bifida Foundation, Mumbai, India.
A comprehensive Physiotherapy plan for SB From infancy into adulthood Dr. Snehal Deshpande
Director- Sneh...RERC

Consultant- Pediatric Rehab-
DR L H Hiranandani Hospital- Mumbai
A free mind with a challenged life Ms. Aveena Devi
Visual Artist, Malaysia
Management of Spine problems Dr. Taral Nagda
Pediatric Orthopedic Surgeon Hinduja Hospital , Mumbai
SB - Financial Planning for Medical care & Future Life Mr. T. V. Sudhakar
Vice President Kotak Mahindra Bank, Mumbai India
TBC Taiwan  



Chairperson : Ms. Renu Victor

TOPIC SPEAKER CHAIR
HYDROCEPHALUS and its management Dr. Benjamin Warf
Hydrocephalus/Spina Bifida Chair
Boston Children's Hospital
Professor of Neurosurgery
Harvard Medical School, Boston USA
INCLUSIVE EDUCATION Mr. Satish Kapoor
Expert in the field of Special and Inclusive Education, UN Volunteer and Founder Director, Brotherhood
SB ; Schooling and Education in India Ms. Vinita Jindel
Founder ISBA 1999
Works to connect Parents &
Individuals with Spina Bifida, Jaipur Rajsthan.
My Education ;
My Experience
Ms. Suman Sudhakar
Junior Marketing Manager with
Varistha Software Technologies
My Education ;
My Experience
Ms. Suman Sudhakar
Junior Marketing Manager Webnetism Software Solutions India Pvt Ltd
International Speaker Ms. Yang Mee
CEO of GameviewPvt. Ltd., President and Co-Founder Spina Bifida Association in Malaysia
QOL issues for the Care Givers Dr. Manoj Bhatavadekar
Psychological Medicine, Psychiatrist, Mumbai



Chairperson: 1 Dr. Godfrey Oakley
2. Dr. Alaric Aroojis

TOPIC SPEAKER CHAIR
Micronutrients & Birth Defects Mr. Rohit Shelatkar
Nutrition Expert, Vice President –
Meyer Vitabiotics
Story of FetalSurg for Birth Defects –including SB Dr. Mohan Abraham
Prof.Ped. Surgery, Amrita Institute of medical sciences, Kochi
Born with SB, becoming a doctor and onto becoming President of IF Dr. Margo Whiteford
Consultant Clinical Geneticist, President – IFSBH, Scotland
What I want to tell my Doctor A Parent – from India
Ms. Renu Victor
Special Assistant,
Union Bank of India
Psychosocial Issues – in persons with disabilities (Spina Bifida) Dr. Manoj Bhatavadekar
Psychological Medicine,
Psychiatrist, Mumbai

Dr. Amy McPherson
Scientist in the Bloorview
Research Institute
Assistant Professor- University of Toronto, Canada


VIEWPOINTS Everyone has a right to live….!!!
Birth Defects- Selective treatment
Mr. Pierre Mertens
Director Child-Help International,
Brussels, BelgiumS
IF Award and Inaugaration    


TOPIC SPEAKER PHOTO
Welcome & Introduction
Dr. Santosh Karmarkar
Consultant Pediatric Surgeon
Lilavati Hospital Founder
trustee - Spina Bifida Foundation Mumbai, India


Dr. Margo Whiteford
Consultant Clinical Geneticist,
President – IFSBH
Glasgow, Scotland


The real Incidence and Prevalence of NTDs in India & the World Dr. Anita Kar
Professor & Director
School of Health Sciences
University of Pune
Pune, India
The Genetics and Epigenetics of NTDs Dr. Madhulika Kabra
Additional Professor & Officer-in-Charge,
Genetics Unit, Department of Pediatrics,
AIIMS,
Delhi, India
Antenatal diagnosis and prognosis of NTDs Dr. Chander Lulla
Consultant fetal medicine specialist
Jaslok Hospital
Mumbai, India
Counselling as an obstetrician and fetal medical specialist Dr. Pooja Lodha
Ruby Hall clinic, Pune, India

Shining like an Emerald ! Ms. Phyllis Mukwala
& Mr. Moffat Mukwala
CEO of Gerntina Mines Ltd,
Zambia
Prognostication and Counseling at birth – In the Indian/SE Asian context Dr. Santosh Karmarkar Consultant Pediatric Surgeon
Lilavati Hospital Founder
trustee - Spina Bifida Foundation Mumbai, India
Holistic care and timelines in the care of SB Dr. Amrish Vaidya
Consultant Pediatric Surgeon
Jaslok Hospital
Mumbai, India
Shining like an Emerald ! About Phyllis
Ambassador Zambia
 



Chairperson : Dr. Alaric Aroojis
Dr. C Deopujari

DURATION OF DISCUSSION
TOPIC
SPEAKER'S
PHOTO
It all starts with the Back Lesion.... The Back Closure for MMC – Is laminectomy always necessary? Dr. Deepak Gupta
AIIMS Delhi, India.

Orthopedic Care Symposium 1

Introduction & Initial Orthopaedic evaluation & overview Dr. Alaric Aroojis
Medical Director, Miraclefeet India & Global Operations Consultant, Paed. Ortho Surgeon, BaiJerbaiWadia Hospital for Children, Parel, Mumbai
  Management of Foot and Ankle in SB Dr. B. D. Athani Principal consultant  Paediatrics orthopedics and Rehabilitation  Safdarjung hospital VMMC

Delhi, India

The Making of a Swimming Champion   Mr. Parth Hendre and Family
National level Paralympic swimmer

PEDIATRIC HYDROCEPHALUS

& SB

SEMINAR
Introduction Dr. C. Deopujari Head Department of Neurosurgery Bombay Hospital Mumbai, India.  

Lead Speaker

Pediatric Congenital

Hydrocephalus ;

An Overview and Whatsnew ? ETV with Choroid plexus fulguration
Dr. Benjamin Warf Hydrocephalus/Spina Bifida Chair Boston Children's Hospital, Professor of Neurosurgery Harvard Medical School, Boston USA

Speaker 2

Congenital Hydrocephalus – Shunt procedures
Dr. Jeffrey Blount Pediatric Neurosurgeon Birmingham Alabama USA  

Panel Discussion

Dr. Minu Bajpai
Professor of Pediatric Surgeon, AIIMS, Delhi
Case Presentation Dr. Shubha Nayak



Chairperson : Dr. Subhashish Roy Choudhary

SPEAKER/PANELISTS SPEAKER PHOTO
Developing a physiotherapy program for infants & children with SB
Dr. Snehal Deshpande
Director- Sneh...RERC Consultant- Pediatric Rehab- DR L H Hiranandani Hospital - Mumbai
Orthotic Management in SB -role of Dynamic Splinting Mr. Rohan
Pediatric Therapist
PT, NDT & SI Trained, CTT, KTP
Theratogs Instructor For India

INCONTINENCE SYMPOSIUM

Introduction

Dr. Santosh Karmarkar
Consultant Pediatric Surgeon Lilavati Hospital Founder trustee - Spina Bifida Foundation Mumbai, India
Lead Speaker 1 Dr. Sudipta Sen
Coimbatore, India Immd.Past HOD Department of Pediatric Surgery CMC . Vellore
Speaker 2
Botox in the Urinary Bladder
Dr. Sujit Chowdhary
Consultant Ped Urology ,
Apollo Hospital New Delhi
Speaker 3
Management of Bowel Incontinence
Dr. Kanishka Das
Head Of Dept Pediatric Surgery AIIMS Bhuvaneshwar, India
Panel Discussion Moderator
Dr. S. Karmarkar
Dr. Sudipta Sen

Coimbatore, India
Immd.Past HOD
Department of Pediatric Surgery
CMC . Vellore



Dr. Snehal Deshpande

Director- Sneh...RERC Consultant- Pediatric Rehab- DR L H Hiranandani Hospital- Mumbai




Dr. Santosh Karmarkar

Consultant Pediatric Surgeon Lilavati Hospital Founder trustee - Spina Bifida Foundation
Mumbai, India




Dr. Sujit Chowdhary
Consultant Ped Urology ,
Apollo Hospital New Delhi


Dr. Kanishka Das
Head Of Dept Pediatric Surgery AIIMS

Bhuvaneshwar, India







Chairperson : 1.Prof Godfrey Oakley
2.Mr.Sudhakar

TOPIC
SPEAKER'S
PHOTO
Micronutrients & Birth Defects Rohit Shelatkar
Nutrition Expert, Vice President Meyer Vitabiotics London UK
Story of Fetal Surg for Birth Defects – including SB Dr. Mohan Abraham
Prof.Ped. Surgery, Amrita Institute of medical sciences, Kochi
Born with SB, becoming a doctor and onto becoming President of IF Dr. Margo Whiteford
Consultant Clinical Geneticist,
President – IFSBH Glasgow, Scotland
What I want to tell my Doctor Ms. Renu Victor
Special Assistant, Union Bank of India Kolkata, India

SESSION ON Psychosocial Issues – in persons with disabilities (Spina Bifida)

Dr. Manoj Bhatavadekar
Psychological Medicine, Psychiatrist, Mumbai

 


Dr. Amy McPherson
Scientist in the Bloorview Research Institute Assistant Professor- University of Toronto, Canada

VIEW POINTS
Everyone has a right to live !




Birth defects – selective treatment Medicolegal issues in India
Mr. Pierre Mertens
Director Child-Help International Brussels, Belgium



Audience Interaction
IF AWARD & INAUGURATION  



Chairperson : Swati Parekh

TIME BREAK UP
TOPIC
SPEAKER'S
PHOTO

Parent/individual

Can introduce
Obesity Management in SB

Ms Amy McPherson,
Scientist in the Bloorview Research Institute
Toronto, Canada

EMPLOYMENT SESSION

Introductory talk

Employment opportunities for SB in India

Ms. Manasi Bapat
spanish translator

 

Ms. Ira Singhal
Indian Administrative Service,
SDM, Alipur

Interaction with Audience



Chairperson : Farooq Wani

TIME BREAK UP TOPIC SPEAKER CHAIR
Panel Discussion After Parents -who and where

Mr. Kulkarni

Pierre Merten

Mutriba Latypova
Country Coordinator, USAID-GAIN Dushanbe, Tajikistan

Moderator By Mrs.Janhavi Modi
Medical Issue Pressure Sores Prevention and Care Dr. Hitesh Shah
Associate professor Pediatric Orthopaedics services Manipal



Chairperson : 1. Dr. Benjamin Warf
2. Vinita Jindel

TIME BREAK UP TOPIC SPEAKER
 

A Dedication to Late Mr.Javed Abidi

Remberance of Netra Award

Ms. Jahanvi Modi
Co-founder- SBF Mumbai, India

Mr. David Morrissey,
International disability program consultant, executive director of U.S. International Council on Disabilities (USICD) in Washington, DC from 2009 to 2017.

NCPEDP

My efforts and my life for prevention of NTD in the world Prof. Godfrey Oakley,
Director, Center for Spina Bifida Prevention Emory University, Atlanta, GA, USA
 
Living , Loving and Laughing with SB in different parts of the World

Mr. Cato Lie
Board Member, IF Norway

Dr. Margo Whiteford
Consultant Clinical Geneticist, President – IFSBH, (Scotland)

Ms. Janet Manoni
Regional Coordinator – Child Help International Tanzania

Mr. Srwan Agarwala
Director of SRG group of companies, Executive member of Andaman Chember of Commarce and Industry, Port Blair

Mr. David Morrissey
International disability program consultant, executive director of U.S. International Council on Disabilities (USICD) in Washington, DC from 2009 to 2017.

Mrs. Gamage Srilanka
Taiwan

Moderator
Dr. Santosh Karmarkar
Consultant PediatricSurgeon, SBF Founder, India

Mr. Pierre Mertens
Dire.Child-Help International Belgium



DURATION OF TALK
TOPIC
SPEAKER'S
PHOTO
  Yoga and mental health Ms. Ewa Kampelman
Dy. Secretary General, IF Yoga Specialist
  Becoming a mother with SB Film by SBF
Ms. Divya – Muzaiyen
Chennai, India
 
  SB, Fertility and Pregnancy Dr. Mala Shrivastawa
Prof/ Sr. Consultant Obst&Gyn, Gangarama Hospital, New Delhi
  Aging with Spina Bifida Mr. Cato Lie,
Board Member, Norway
  What I want to tell my Doctor Ms Renu Victor
A parents from Kolkatta
  Valedictory    




Chairperson : Dr. Anurag Krishna
Dr. Deepak Gupta

TOPIC
SPEAKER'S
PHOTO

Orthopedic

2 CASE Discussions

Dr. Farokh Wadia
Consultant Paediatric Orthopaedic Surgeon Sir HN Reliance Foundation Hospital Hon Assistant Professor, Sir J J Group of Hospitals, Mumbai

 

Dr. Rajeev Negandhi
Pediatric Orthopedic Specialist Kolhapur

SYMPOSIUM
The Tethered Cord in Spinal Dysraphism

Introduction
Dr. N. K. Venkatramana
Founder & Chief Neurosurgeon
BRAINS( Neuro spine center) 
Editor in chief – Brain voice 
Executive Member – International Federation of Neuroendoscopy(IFNE)

Lead Speaker
Professor Graham Fieggen Head, Division of Neurosurgery Head, Department of Surgery Director, Neuroscience Institute,
Capetown SA

 

Panel Discussion
Moderator
Dr. Benjamin Warf
Hydrocephalus/Spina Bifida Chair Boston Children's Hospital Professor of Neurosurgery Harvard Medical School, Boston USA

 

Professor Graham Fieggen
Head, Division of Neurosurgery Head, Department of Surgery Director, Neuroscience Institute

 

Dr. Taral Nagda
Pediatric Orthopedic Surgeon Hinduja Hospital , Mumbai

 

Dr. Ravindra Vora
Pediatric Surgeon,Sangli, India

 

Case Presentation
Dr. Swati C

 

Imaging expert
Dr. Anju Garg
Dir Prof and HOD
Department of Radiodiagnosis 
Maulana Azad Medical College



Chairperson : Dr. Sangram Singh
Dr. Sanjay Swaroop

DURATION OF TALK TOPIC SPEAKER/S PHOTO
Orthopedic Care Symposium 2 PediatricKypho-Scoliosis State of the Art Dr. Arvind Jayswal
Head of The Department of Spine Surgery,
Primus Super Speciality Hospital,
Delhi, India
Management of the Hip in SB Dr. Hitesh Shah
Associate professor
Pediatric Orthopaedics services
Manipal, India
  Prevention and Management of pressure sores  in MMC Prof (Dr.) Amara
Naicker Naysaduray

ConsultantRehabilitation Physician
Head of Rehab Medicine Unit
Dept of Orthopedics and
 



Chairperson : 1. Dr. Benjamin Warf
2. Vinita Jindel

 

TOPIC

SPEAKER'S

CHAIR
 

A Dedication to

Late Mr. Javed Abidi

Ms. Jahanvi Modi
Co-founder- SBF Mumbai, India

Mr. David Morrissey,
International disability program consultant, executive director of U.S. International Council on Disabilities (USICD) in Washington, DC from 2009 to 2017.

 
  Remberance of Netra Award NCPEDP  
  My efforts and my life for prevention of NTD in the world Prof. Godfrey Oakley,
Director, Center for Spina Bifida Prevention
Emory University, Atlanta, GA, USA
 
  A day With Kartik in School A day with Kartik in
School
Film By SBF- Sonal
 
  Living , Loving and Laughing with SB in different parts of the World

Mr. Cato Lie,
Board Member, IF Norway

Dr. Margo Whiteford
Consultant Clinical Geneticist,
President – IFSBH, (Scotland)

Ms. Janet Manoni,
Regional Coordinator – Child Help International Tanzania

Mr. Srwan Agarwala
Director of SRG group of companies, Executive member of Andaman Chember of Commarce and Industry, Port Blair

Mr. David Morrissey
International disability program consultant, executive director of U.S. International Council on Disabilities (USICD) in Washington, DC from 2009 to 2017.

Mrs. Gamage ,
Srilanka

Taiwan

Moderator
Dr. Santosh Karmarkar
Consultant Pediatric Surgeon Lilavati Hospital Founder trustee - Spina Bifida Foundation Mumbai, India

Mr. Pierre Mertens,
Dire.Child-Help International Belgium



DURATION OF TALK
TOPIC
SPEAKER'S
PHOTO
  Yoga and mental health Ms. Ewa Kampelman
Dy. Secretary General, IF Yoga Specialist
  Becoming a mother with SB Film by SBF
Ms. Divya – Muzaiyen
Chennai, India
 
  SB, Fertility and Pregnancy Dr. Mala Shrivastawa
Prof/ Sr. Consultant Obst&Gyn, Gangarama Hospital, New Delhi
  Aging with Spina Bifida Mr. Cato Lie,
Board Member, Norway
  What I want to tell my Doctor Ms Renu Victor
A parents from Kolkatta
  Valedictory