Prof Dr Agnieszka Pastuszka

Professor Agnieszka Pastuszka is a renowned pediatric surgeon, pediatric urologist, and fetal surgeon. She leads the Chair and Department of Descriptive and Topographic Anatomy at the Medical University of Silesia, Faculty of Medical Sciences in Zabrze. Specializing in Pediatric Surgery (2005) and Pediatric Urology (2012), she earned her PhD in 2002 and a post-PhD title in 2021 for her research on prenatal surgery for fetal myelomeningocele. With 71 publications, 35 abstracts, and three book chapters, she has received several awards, including the European Fetal Surgery Pioneer Award in 2019. Professor Pastuszka's work focuses on fetal surgery, urinary bladder dysfunctions, and developmental disorders in children. A member of the pioneering Polish fetal surgeons' group, she has operated on over 200 fetuses with spina bifida. She also runs a Urotherapeutic Studio for children with spina bifida through the Spina Foundation and is involved in European Reference Networks for rare diseases. Her training includes programs in Sweden, the USA (Philadelphia, 2016; Cincinnati, 2019), and she actively participates in the European Club for Fetal Surgery (EFCS) and the International Continence Society (ICS).

Mr Ahmad Zaidin Othman

Return to Work Department Employment Services Division Employment Insurance System

Dato' Dr Amar-Singh HSS

Dato’ Dr Amar-Singh HSS, Cert Theology (Aust, Hons), MBBS (Mal), MRCP (UK), FRCP (Glasg), MSc Community Paediatrics (Ldn, distinction), is a Consultant Paediatrician. He served the Malaysian civil service for 35 years and led both a regional Paediatric Department and a Clinical Research Centre. He has assisted the Ministry of Health to revise the child health services and introduced a number of national programmes for children including developmental screening. He is active in research, has published a number of books, including one on research, and has numerous local and international research publications and reports. He has a long-standing interest in children in the community, disability, family self-help groups, NGOs, child abuse, adolescents, disadvantaged & marginalised children (especially the indigenous). He has established a number of NGOs and family support groups. He is the advisor for the National Early Childhood Intervention Council (NECIC) and the National Family Support Group for Children & People with Special Needs. With his wife, he also offers spiritual direction and counselling. He is an active child and disability activist and is the recipient of the “Outstanding Asian Paediatrician Award” 2012, the “SENIA Advocacy Award” 2016 and the “Rehabilitation International Centennial Award for Significant Contributions” 2023. He is also an honorary Senior Fellow at the Galen Centre for Health and Social Policy.

Prof Dr Amaramalar Selvi Naicker

She is a Rehabilitation Physician.

Dr Amita Vivehanantham

Dr. Amita Vivehanantham, graduated with M.B.B.S from International Medical University in 2005. Subsequently completed her Membership of Royal of Physician Child Health (MRCP CH) in 2013. She completed her 3 years subspeciality training in Neonatology under Ministry of Heath (MOH) in 2021, namely Hospital Selayang, Hospital Tunku Azizah (HTA) and Sarawak General Hospital (SGH). She is currently serving as a Neonatologist at SGH. She has attended training in Prenatal Diagnosis and Fetal Therapy for Spina Bifida at Mater Hospital, Brisbane, Australia. Her specialty is in Pediatrics.

Ms Anastasia Smith

Ms Andrea Koh

Growing up in Sarawak, where Ms Andrea Koh experienced life in both rural and urban areas with diverse ethnic backgrounds, taught her to adapt to change. She have seen firsthand how limited resources and lack of education, particularly in the realm of sexual health, can lead to mistreatment, teenage pregnancy, and other related issues. Driven by her desire to make a difference and spreading awareness about sex education, Ms Andrea specialize in sexology because she believe in our power to create systemic change. Despite the challenges in Malaysia, she is dedicated to fostering a more open dialogue about sexuality and empowering individuals with comprehensive sex education. With six years of experience in sexology and a second master’s degree in Counseling, Ms Andrea is here to support individuals and couples in all areas of life, not just sexuality. Her aim is to help everyone lead happier and healthier lives, one step at a time.

Mr Andrej Drdul

• Married: 29 years • Children: Three • Parent of a child with Spina Bifida and/ or Hydrocephalus • Education: special teacher • Co-founder of Slovak Association for Spina Bifida and/or Hydrocephalus (2004) • Special teacher and Consultant in Early intervention and Elementary school • Co-organizer of 20 years of Summer Camps of Independence and numerous projects to support children, teenagers, young adults with disability, and parents and enlightenment of the prevention as well.

Dr Arvind Betigeri

Arvind has over 15 years of experience designing and delivering large scale Health and Nutrition programs. He is currently the Senior Rice Fortification Advisor for Asia and Pacific at the World Food Programme where he is responsible for scaling rice fortification across Asia and Pacific. His work focuses primarily on working with governments to introduce and integrate fortified rice into supply chains by strengthening food delivery systems. Arvind has been instrumental in scaling up rice fortification in India and other parts of Asia through the safety net programs. He also has extensive experience in building public private partnerships in the area of nutrition and health. His has previously worked with NITI Aayog – Government of India, PATH and CARE.

Dr Ayoub Al-Jawaldeh

Mdm Ayu Primarini

Ayu Primarini is a dedicated advocate for individuals with spina bifida, serving as a Senior Government Official at the Ministry of Rural Development in Indonesia. With personal experience as an adult person with spina bifida meningocele, Ayu will share her journey from childhood through adolescence to adulthood, highlighting the challenges and triumphs she faced. She is actively involved in various initiatives aimed at raising awareness and improving access to care for individuals with spina bifida. Ayu is a key figure in the Komunitas Spina Bifida Indonesia, where she leads the community to focus on creating advocacy networks, facilitating communication, as well as collaborating with healthcare professionals to enhance the quality of life of people with spina bifida in Indonesia. Ayu is also committed to organizing community events that promote connection and empowerment.

Dr Azizi Abu Bakar

Dr. Azizi Abu Bakar is an accomplished neurosurgeon specializing in complex brain and spine procedures. He has extensive expertise in the treatment and surgical management of arteriovenous malformations (AVMs), congenital malformations of the brain and spine, and craniofacial reconstructions. Dr. Azizi's skill set includes performing intricate surgeries such as brain and spine tumor removal, brain revascularization (direct and indirect brain bypass), and repair of brain aneurysms and AVMs. He is also experienced in treating conditions like epilepsy, spina bifida, trigeminal neuralgia, and spinal cord injuries. In addition to his clinical practice, Dr. Azizi is known for his pioneering work in fast-track neurosurgery, which enhances recovery time for patients. His commitment to excellence has earned him several prestigious awards, including the Excellent Service Awards in 2005, 2007, and 2010. He holds a Master of Surgery from Universiti Kebangsaan Malaysia (UKM) and has completed fellowships in vascular and pediatric neurosurgery, as well as an advanced neurosurgery fellowship in Australia. Dr. Azizi continues to make significant contributions to the field, helping patients overcome complex neurological conditions with cutting-edge surgical interventions.

Mr Cato Lie

Cato Lie from Norway was born with Spina Bifida and is a wheelchair user. He has a masters’ degree in business administration (MBA) from Handelsakademiet in Oslo. Since 2002, he has worked for FFO, the Norwegian Federation of Organizations of Disabled People, member of EDF. For the past ten years, he has been responsible for FFOs policy on universal design and accessibility in all areas of society, buildings and housing, transport and ICT. He aims to influence politicians in the Norwegian Government and Parliament on accessibility. Moreover, Cato was previously a board member of the International Federation for Spina Bifida and Hydrocephalus. Cato has personal knowledge of spina bifida having been born with the condition.

Dr Chan Yean Koon

Dr Chan Yean Koon is a Rehabilitation Physician currently based in the Paediatric Rehabilitation Unit in Cheras Rehabilitation Hospital. She was a government scholar and graduated from the University of Southampton in 2009. She completed her training in Rehabilitation Medicine in the University of Malaya. She also serves as a volunteer and Secretary for the Spina Bifida & Hydrocephalus Association of Malaysia (SIBIAM).

Ms Cheah Phaik Lin Jeannie

Dr Chern Phei Ming

Dr. Chern Phei Ming is a medical graduate from University of Malaya, Malaysia and trained in the specialty field of Rehabilitation Medicine at the same university. She pursued her fellowship in paediatric rehabilitation at the Women’s and Children’s Hospital Adelaide, Australia. She has been practicing as rehabilitation medicine specialist since year 2004 and currently served as Consultant Rehabilitation Physician, Head of Paediatric Rehabilitation Unit and Head of Clinical Research Centre at Hospital Rehabilitasi Cheras, Malaysia. Dr Chern’s interests are in cerebral palsy, spasticity management (intramuscular botulinum toxin injection, intrathecal baclofen pump therapy), gait analysis, and prosthetic & orthotic management in children.

Prof Dr Christian Radmayr

Professor of Urology and European Board certified Paediatric Urologist (FEAPU). Current position as chair of the EAU Paediatric Urology Guidelines Panel. Retired head of Paediatric Urology at Medical University Innsbruck – Austria. Member of many national and international scientific organizations. Previous board member of the European Society for Paediatric Urology and local organizer of the 25th Silver Jubilee Congress of the ESPU in Innsbruck – Austria. Examiner at the European Board exams for Urology and Paediatric Urology. More than 130 original papers in peer reviewed journals (Medline status as of May, 28th 2024: 130 peer reviewed publications) and more than 250 published abstracts as well as more than 20 book chapters comprise the bibliography.

Ms Christina Anastas

Christina has been a senior clinical physiotherapist in the Spinal Rehabilitation caseload at Perth Children’s Hospital since 1997. She was instrumental in creating a dedicated specialist physiotherapist for the caseload and has been passionate about excellence in the management of children with Spinal Dysraphism, and Spinal Cord Injury. She is active in supporting community, rural and remote physiotherapists and contributes regularly to a nationwide network of specialised physiotherapist working in paediatric spinal rehabilitation. She has completed numerous continuous improvement projects, including transition pathways, feasibility studies in the use of exoskeletons and specialised equipment, and a document comparing Spinal Rehab Services in Australia , recently presented at the Australasian Faculty of Rehabilitation Medicine. She is passionate about minimising barriers for children with Spina Bifida, maximising quality of life, and ensuring all patients receive excellence in their physiotherapy management. She welcomes contact via email christina.anastas@health.wa.gov.au

Ms Christine Kuca-Thompson

Christine Kuca-Thompson is a disability advocate and past Client Services Coordinator with the Spina Bifida Association of Western Australia. She has been actively involved in disability services for over 30 years. Throughout her career, she has supported people with varying disabilities to understand their rights and speak their voice, while at the same time working to change workplace, community and individual attitudes towards disability. Her roles have included support worker, workplace trainer, and project manager. As a trainer with not-for-profit organisations, Christine has focused on training staff to deliver services to people with disability and their families. Her most recent role was managing a nation-wide project of 16 people with intellectual disability across Australia. She designed and developed resources for the federal government on how to be inclusive of people with intellectual disability. Christine currently runs her own team building business that aims to build stronger work teams. Her company, TeamLab, designs all programs to be inclusive of everyone. It discusses accessibility requirements with every client and employs people with disability. In her spare time Christine continues her creativity in painting, sewing and woodworking. She loves to read, learn new things, visit art galleries and travel.

Dr Chua Li-Shun

Dr Chua is a rehabilitation physician with special interests in spinal cord injury rehabilitation and cancer rehabilitation. She developed a passion for health equity, human rights and disability rights during medical school, which led to her involvement in various rights-based non-governmental organisations. As part of Spina Bifida and Hydrocephalus Association Malaysia (SIBIAM), she has driven participation in IFSBH campaigns, highlighted education and employment opportunities, as well as provided support to members seeking medical advice. She hopes that the Malaysian spina bifida and hydrocephalus community can build more allyships, both locally and internationally, with the relationships formed at this conference.

Ms Chua Siew Chien

Miss Chua Siew Chien is a Clinical Nurse Educator specializing in Rehabilitation at Pusat Perubatan Universiti Malaya. With a deep commitment to advancing nursing education, she has played an essential role in developing training programs tailored to the needs of rehabilitation nurses. Her expertise extends across various areas of patient care, clinical instruction, and continuous professional development, helping healthcare professionals enhance their skills and deliver optimal care. Miss Chua’s dedication to her field is reflected in her efforts to ensure the highest standards of practice are met, contributing to improved patient outcomes and overall healthcare quality.

Dr Cut Hafifah

Dr. Cut Hafifah is a consultant of pediatric nutrition and metabolic disease from Cipto Mangunkusumo Hospital, Jakarta, Indonesia. She finished her medical training in Faculty of Medicine Universitas Indonesia and continue her pediatric training and subspecialty training in the same university. She is now working in one of Indonesia’s referral hospitals, managing complex pediatric cases, including rare disease. She focuses her work in ensuring better nutritional care for children with birth defect. She is also involved in multiple organizations related to nutrition, inborn errors of metabolism, and genetic disease.

Mr Daniel Lee

Daniel Lee is a motivational speaker, wheelchair athlete, All Ability advocate and founder of 360 All Ability, a social enterprise aimed to improve the inclusion of PWDs in our society. He was born with Type 1 Osteogenesis Imperfecta, a.k.a. brittle bones disease. Due to this condition Daniel has suffered numerous fractures throughout his life. However, that did not stop nor hinder Daniel’s desire to live a full life. He has completed numerous marathons in his wheelchair, represented Malaysia in the Asian Youth Para Games as a sitting volleyball player, and completed a 100km ultramarathon to raise over RM 160,000 for the Dignity For Children Foundation. Daniel is currently training as a wheelchair fencer and aiming to qualify for the 2028 LA Paralympic Games.

Prof Dr Dharmendra Ganesan

He is a Senior Consultant in Neurosurgery at the University of Malaya Medical Centre, Kuala Lumpur. He is an academic staff with the University of Malaya, Kuala Lumpur. He trained as a neurosurgeon at the University of Malaya Medical Centre and Addenbrooke’s NHS Trust, Cambridge, UK, which culminated in securing the intercollegiate exam FRCS in Neurosurgery (UK) in June 2006. He continued to sub-specialize in Complex Spinal surgery and Pediatrics Neurosurgery. He returned to the University of Malaya in early 2008 and has been there since. He has published several clinical papers based on exciting research in reputable journals such as the Journal of Neurosurgery, British Journal of Neurosurgery, Child Nervous System, Journal of Spine, Lancet, Neurology Asia. He is also a fellow of the several Royal College of Surgeons in the UK and a member of the American College of Surgeons.

Prof Dr Eduardo Tizzano

Professor Eduardo Tizzano, is a Pediatrician and Medical Geneticist and is Director of the Department of Clinical and Molecular Genetics at the Vall d’Hebron Hospital in Barcelona, Spain. Professor Tizzano’s main areas of research include the characterization of spinal muscular atrophy (SMA) during human development, genotype–phenotype correlations, role of modifier genes, and validation of biological markers, and he has published extensively in both these areas and on other rare genetic disorders, including neurodevelopmental, neuromuscular and metabolic diseases. Professor Tizzano is very active in academic and research activities at national and international levels collaborating with different academic and hospital centers and participating as PI and collaborator in clinical trials, projects and as professor in different educational initiatives. He has close liaisons to regional, national and international patient support groups as well as scientific groups and societies.

Dr Edward Chan

Dr Elyana Jalil

Dr Elyana Jalil is a dedicated and joyful rehabilitation medicine physician from Hospital Queen Elizabeth, Kota Kinabalu, Sabah. She used to work in Hospital Rehabilitasi Cheras in Paediatric Rehabilitation Unit. She graduated from University Malaya. She loves her patients as much she loves her food.

Dr Erin McNamara

Dr. McNamara is a pediatric urologist at Boston Children’s Hospital. She completed a 6-year urology residency at Duke University followed by a one-year fellowship in cancer survivorship and reconstructive urology at Duke University. Upon completion of this fellowship, she then completed a 3-year pediatric urology fellowship at Boston Children’s Hospital. During that time she obtained her Masters in Public Health and completed a Health Services Research Fellowship at Harvard. Upon completion of her training, she accepted a position at Boston Children’s Hospital to assist with the spina bifida center, to perform complex reconstructive cases, and to help with transitioning care of adolescent/young adult patients with complex urologic conditions. While both her clinical and research interests are primarily focused on the spina bifida population, she is also interested in other urologic conditions such as exstrophy, posterior urethral valves, disorders of sex development and complex hypospadias that need to be followed into adulthood. She first became interested in Transitional Urology during residency and spent her research time in fellowship developing projects to better understand the health care needs and utilization in this young adult population. She has done both qualitative and quantitative research studying health care transition and has looked at outcomes in surgery using both local and national databases. Dr. McNamara is passionate about establishing a transition program at her home institution. With her unique training in both adult reconstructive urology and pediatric urology, she is building fruitful collaborations with adult reconstructive providers to ensure that her patients get the care they need to lead productive and healthy lives.

Mr Fann Lim

Mr. Lim Fann is a Certified Prosthetist Orthotist (CPO) by the American Board for Certification in Orthotics, Prosthetics & Pedorthics (ABCOP). He obtained his Bachelor of Science in Biomedical Engineering from Purdue University, before obtaining his Master of Science in Orthotics and Prosthetics from California State University – Dominguez Hills. Fann has experience working with patients of different demographics, including paediatrics, geriatrics, local and international. Currently, he is the second generation in Limb Brace, a family-owned O&P clinic dedicated to improving the quality of life of all patients by providing the best prosthetic and orthotic care.

Mdm Faridah Omar

Mdm Faridah Omar commenced her career in physiotherapy with a Diploma in Physiotherapy obtained in 1997, followed by a Bachelor of Science in Applied Rehabilitation (Physiotherapy) from the University of Teesside, UK, through e-learning at UITM in 2006. She further advanced her qualifications with a Master in Physiotherapy from MAHSA in November 2021. Her professional interests span Cardio Pulmonary Rehabilitation, Muscular Skeletal care, Upper Limb and Hand Rehab, Hydrotherapy, and Administrative Work. Mdm Faridah has accumulated a wealth of experience across various healthcare institutions including GHKL, Kuala Lipis Hospital, HTAA Kuantan, Hospital Ampang in Selangor, Hospital Temerloh in Pahang, and Hospital Tengku Ampuan Afzan in Kuantan, focusing on outpatient care in Muscular Skeletal and Cardiac Rehabilitation. Since 2013, she has held significant leadership roles as the Head of the Physiotherapy Unit at HTAA and Head of Physiotherapy Profession for JKNPahang. Additionally, she serves as a local preceptor for UIAM physiotherapy degree students since 2015 and as an external examiner for diploma students at KPJ University since 2023.

Ms Farizan Abdul Majid

Since joining UKM in the year 2000, Farizan has served in various surgical and medical divisions. She has been in OR -started with an orthopedic surgical team, followed by HUKM interventional radiology services pioneered by Professor Dr.Sobri Muda, a short stint with HUKM Gastroenterology services under the auspices of Assoc. Prof. Dr. Wong Zhiqin, and, presently with Pediatric Neurology Team HCTM/HPKKunder Assoc. Prof. Dr. Wong Sau Wei. She also previously undertook many nursing roles under Assoc Prof. Dr. Kanaheswari Yoganathan until she retired from UKM. Throughout these years, she discovered her love for learning new skills, helping in the development of stand-alone patient databases for clinical research, and most importantly, the art and science of working with children. Farizan's past clinical experiences include various nursing procedures for adult and child patients. When the COVID-19pandemic was at its peak, she was tasked to look after Stage4 patients when HPKK was re-purposed as a full-fledgedCOVID-19 hospital. She has also been an in-charge nurse for neonatal Palivizumab (Synagis®) injections since the year2012. She also previously participated as a clinical demonstratorfor the newly minted Faculty of Dentistry UKM first-yearpostgraduate students and HCTM/HPKK dental officers aswell as an invitation to share her knowledge on cleanintermittent catheterization (CIC) in the webinar organisedby the Spina Bifida Association Malaysia.

Prof Dr Fong Choong Yi

Professor Dr Fong Choong Yi is a medical graduate from University of Nottingham, UK. He trained in Paediatrics and Paediatric Neurology in UK and has subspecialty dual-fellowship training in Paediatric Epilepsy and Paediatric Electroencephalography at Brisbane and Melbourne, Australia. He is currently Professor and Consultant Paediatric Neurologist at University Malaya, Kuala Lumpur, Malaysia. His research interests include paediatric epilepsy, improving qualiy of life of children with neurological disorders, paediatric bone health and using novel information technology applications in improving the quality of lives of children with neurological disorders.

Dr Gayathri Mariappa

Dr. Gayathri Mariappa graduated from MMMC, Manipal University, and became a member of the Royal College of Obstetricians and Gynecologists in 2017. She has worked at Sarawak General Hospital in Kuching and Hospital Tunku Azizah in Kuala Lumpur before joining Sunway Medical Centre Velocity Hospital. Dr. Mariappa completed her Maternal Fetal Medicine training under Malaysia's Ministry of Health. She undertook part of her fellowship at West Middlesex University Hospital, Chelsea and Westminster NHS Trust, mentored by Ms. Joanna Girling. She has contributed to national guidelines and co-authored training manuals. Dr. Mariappa is dedicated to mentoring trainees in Obstetrics and Gynecology .She is passionate in managing high-risk pregnancies, complex pregnancies, and women with medical conditions during pregnancy.

Dr Glenn Gardener

Dr Glenn Gardener is a Maternal Fetal Medicine specialist and Director of the Mater Centre for Maternal Fetal Medicine at Mater Mothers’ Hospitals. He graduated from the University of Queensland with a medical degree in 1991. Following speciality training in obstetrics and gynaecology, Dr Gardener went on to sub-specialise in maternal fetal medicine, working at King George V Hospital in Sydney and University College Hospital in London. Dr Gardener returned to Mater in 2003 as a consultant in Maternal Fetal Medicine, becoming Director of the Mater Centre for Maternal Fetal Medicine in 2009. Dr Gardener has a long held interest in fetal therapy including in-utero surgery and is currently the only specialist in Australia and New Zealand performing fetal surgery for diaphragmatic hernia and spina bifida. He regularly performs surgery for twin-to-twin transfusion syndrome, in-utero blood transfusions and other complex in-utero procedures. With a particular interest in the prevention of stillbirth, Dr Gardener is involved in research and is a current board member for the International Stillbirth Alliance and leads a Fetal Therapy Special Interest Group through the Perinatal Society of Australia and New Zealand (PSANZ). Dr Gardener is actively involved in teaching obstetric ultrasound and passing on his skills to new doctors.

Ms Goh Shi Ying

Dr Hatim Thaker

Hatim Thaker, MD is a board-certified pediatric urologist and surgeon scientist specializing in neurogenic bladder, minimally invasive robotic surgery, genitourinary oncology, as well as general urologic conditions in children. Dr. Thaker completed his undergraduate studies at Northwestern University and earned his medical degree from the University of Illinois at Chicago College of Medicine. He then completed his five-year urology residency at the University of Southern California/Los Angeles County Medical Center, followed by a three-year fellowship in pediatric urology at Boston Children's Hospital/Harvard Medical School. He serves on the Children’s Oncology Group germ cell tumor committee, performs urodynamic evaluation, and is a urologist for the multi-disciplinary Spina Bifida Center. He has a special research interest in novel neurotoxins for the bladder.

Prof Dr Hatta Sidi

HATTA BIN SIDI is a professor at the Dean’s office at the Faculty of Medicine, Universiti Kebangsaan Malaysia (UKM) Cheras, Kuala Lumpur Malaysia, and a senior consultant psychiatrist in private practice in Selangor, Malaysia. He has more than 24 years of clinical experience lecturing in UKM and treating patients with mental health problems and sexual problems. He has authored more than 190 scientific research papers and books and is one of the reviewer editors for Frontier journals. Dr. Hatta is the former editor-in-chief of the ASEAN Journal of Psychiatry (2008 – 2018). Currently, he is positioned as an academic researcher in UKM and a practicing clinician in private psychiatric practice.

Ms Hazati Raya

Dr Jeffrey Blount

Jeffrey P. Blount, M.D., is a member of the Pediatric Division of the UAB Department of Neurosurgery. His practice is confined strictly to children and he practices at the Children's Hospital of Alabama. Dr. Blount joined the faculty at UAB in 2000. He is board certified by the American Board of Neurological Surgery and the American Board of Pediatric Neurological Surgery. He is a fellow of the American College of Surgeons, the American Academy of Pediatrics and is a member of the American Society of Pediatric Neurosurgery. He has authored more than 100 papers on various topics in pediatric neurosurgery and presents regularly at national and international conferences on pediatric epilepsy surgery and pediatric neurosurgery. He has been visiting professor at 4 institutions and is frequently invited to chair or coordinate panel discussions or courses. Dr. Blount participates in the full spectrum of pediatric neurosurgery but has particular academic interest in the surgical treatment of epilepsy in children, spina bifida, transitional care in spina bifida and public health issues in pediatric neurosurgery.

Mr Julian Sander

Julian Sander is the Regional Business Manager of Muehlenchemie in Asia-Pacific. He joined the company in 2021 and is based in Singapore. Muehlenchemie is a German company, with a history of more than 100 years and a strong focus on the flour milling industry. Flour treatment with the application of enzymes and flour fortification to prevent malnutrition are the core business areas of Muehlenchemie.

Dr Juliawati Untoro

Dr. Juliawati Untoro is a Scientist at the Multisectoral Action in Food Systems Unit of the Department of Nutrition and Food Safety, WHO Headquarters in Geneva, Switzerland. She provides technical support to regions and countries, fostering partnerships and network, and building capacity to design and implement policies that promote healthy food environments, with a particular focus on food fortification and the elimination of trans fats. With over 25 years of experience in international development, Dr. Untoro has been a strong advocate for advancing public health nutrition programs, particularly in low- and middle-income countries. She has worked with numerous multilateral organizations, including as WHO, UNICEF, the World Bank, Nutrition International, and the SEAMEO Regional Center for Food and Nutrition at the University of Indonesia. Her career has spanned the globe, with postings in Indonesia, Canada, the USA, Kenya, the Philippines, and now Switzerland. Dr. Untoro holds a PhD in Human Nutrition from Wageningen University, the Netherlands, and has authored several articles in international peer-reviewed journals.

Ms K. Aveena Devi

K.Aveena Devi is a mixed media artist, author & motivational speaker who was born with a birth defect called spina bifida. Aveena's journey as a differently-abled person has always been challenging; from her complex medical condition to navigating day-to-day life. The constant obstacles she faced with school life and the public's patronising behaviour & constant misperception about her only motivated her to provide more positive changes for the differently-abled community. Due to this, she passionately advocates for inclusivity through speaking engagements, panel sessions and counselling. She is even a working model under a modelling agency that caters to the differently-abled, with the goal of breaking the stigma of beauty standards from the perspective of the media. She has been certified as a Neuro Linguistic Therapist and is working towards bringing all her skills together to build a more inclusive community.

Ms Kateryna Shcherbyna

Kateryna Shcherbyna is the youth representative of the Parents Association for Spina Bifida and Hydrocephalus ‘Lights of Spirit’, Ukraine towards the International Federation for Spina Bifida and Hydrocephalus (IF). In her role as chairwoman of the IF Youth Group with SBH, she represents the voice of emerging adults with spina bifida and or hydrocephalus around the world. Through participation in youth advocacy leadership programs, Kateryna gives guidance to the IF Youth Group with SBH in addressing important issues relevant for youth with SBH around the world. Furthermore, she coordinates youth activities such as thematic awareness-raising campaigns, international youth webinars, and supports local youth groups capacity-building activities. Moreover, Kateryna represents the youth in external professional networks and is an international speaker at regional and international meetings. In this way, Kateryna leads by her lived experiences and provides meaningful colour to the phrase: “Nothing about us, without us”.

Mdm Kerrie Duff

Kerrie Duff (nee Engel) has a long history advocating for people with disability. She has held state and national office bearer roles for spina bifida and hydrocephalus associations and other grass root organisations. In the early 2000's, whilst president of the Australian Spina Bifida and Hydrocephalus Association, Kerrie represented the Pacific Rim region on IF’s board. She spoke at the Dar es Salaam conference then co-facilitated a workshop for adults with sb/h, later co-facilitating another adults’ workshop in Oslo. Kerrie is a Paralympian and disability consultant passionate about providing leadership to and mentoring women/girls, youth and adults with disabilities to assist them to reach their potential. She has a Masters of Human Rights, and Bachelor of Arts. She has travelled internationally to participate in conferences and committees. As part of the Human Library Project Kerrie seeks to demystify 'otherness', giving the community opportunities to talk with people they might never normally meet. In 1999 she co-edited a book ‘Challenge and Hope: Disability, Disease and Trauma in the Developing World’ for World Vision Australia. Professionally and privately Kerrie seeks justice and rights for people whom society often overlooks or ignores. Kerrie is a bookworm and fascinated by textiles and mixed media. She lives with her husband Martin and their dog, Lucy, and loves travelling.

Mr Khursheed Durrani

With nearly a decade of hands on experience in business development in food fortification in East Africa, Middle East, Indian Sub-Continent and South East Asian region, I am well versed in specific requirements of each region. I have also extensively worked along with UN Organizations such as WFP and UNICEF for their food distribution programmes in Nepal, Bangladesh, Bhutan, Pakistan and Thailand through partner organisations supplying Fortrified Blended Food and High Energy Biscuits. Have worked in both B2B and B2C segment with added Lead Auditor qualification in Food Safety and Quality Assurance

Ms Khushbu Ganatra

I am a Spina bifida national level para athlete co-founder of Walk n Wheels Foundation. I have won several medals in my sports journey. I am from a middle-class Gujarati family. Since birth I have faced multiple challenges due to spina bifida which affected my mobility. Due to the lack of resources I was not able to get formal education and relied on my family for mobility. My biggest achievement is running my NGO Walk n Wheels. The organization works towards promoting an inclusive world for all the disabled. The foundation has organized 25 inclusive events.

Ir. Dr Kribanandan Gurusamy Naidu

Mdm Krishnaveni P Krishnan

Mrs Krishneveni AKA Rani, born in Melaka, youngest to 6 siblings, came to Kuala Lumpur to study her secretariat course in 1982 at Stanford college whilst studying she fell in love & got married at 24, Rani being the ambitious lady that she is, explored into many fields till she found her love for beautician, she was pursuing it for 3-4 years till she had to put her career on hold when she gave birth to her youngest, Aveena Devi, who was diagnosed with spina bifida, she then dedicated her time to looking after her kids. As life is full of surprises, 6 years ago she was given an opportunity to achieve a another passion of hers, which was feeding people. Currently she's the proud owner of Restoran Bindhu a pure vegetarian establishment.

Ms Kristin Sundell

Kristin Sundell is senior advocacy specialist at the Global Alliance for Improved Nutrition, where she supports efforts to strengthen large-scale food fortification programs at national, regional, and global levels. Kristin is convenor of the Global Fortification Technical Advisory Group a global coalition of development partners and academics championing large-scale food fortification as a highly effective yet underutilized strategy to combat global malnutrition. In this role, she has strengthened partnerships with organizations beyond the nutrition sector, seeking out opportunities for collaboration with the neurosurgical community and the International Federation for Spina Bifida and Hydrocephalus, among others. She has nearly 30 years of professional experience in policy, advocacy, and campaigns with organizations including Save the Children, ActionAid, the Jubilee USA Network, and the East Timor Action Network. She holds a Master of Divinity degree from Union Theological Seminary in the City of New York, where she studied social ethics and liberation theology.

Ms Lara Arosemena

Ms Laurence Leser

Laurence Leser has been working in the community sector for more than 30 years now, whether it is with family organizations, environmental organizations, or organizations dealing with new immigrants. She has a Bachelor in Cultural research from Université du Québec à Montréal. She has been the executive director of Spina-bifida hydrocéphalie Québec for the past 14 years. During those years, she organized two congresses, developed a transition application, initiated research projects, organized multiple activities for the members, developed partnerships. She has a tendency of thinking big and a bit outside of the box!

Dr Lim Li Yi

SPECIALTY: PAEDIATRIC UROLOGY • Graduated from UNSW (Sydney) in 2008 • Completed Doctor of General Surgery (UKM in 2018) • Passed MBU/FRCS exam in 2022 • Paediatric urology fellowship at Taipei Tzu Chi Hospital in 2022-2022 • Special interest in paediatric functional urology

Ms Lim Yee Jin

Living with Spina Bifida, I have encountered numerous challenges, but I have never let my disability define me or limit my potential. I strongly believe that schooling and education are vital for children with special needs. I completed my education from SPM to STPM and currently, I am studying at the University of Malaya. Over the past three years, I have competed in PARA SUKMA 2022 and the Para ASEAN Games 2023 chess games. These experiences have fueled my passion to inspire others to pursue their dreams and overcome life's obstacles. I am dedicated to empowering individuals with disabilities to live their lives to the fullest.

Ms Liv Tørring

Dr Low Peh Hueh

Peh Hueh Low graduated from Universiti Putra Malaysia with a Bachelor of Science with Honours in Microbiology in 2004. Subsequently, she obtained MBBS from International Medical University in 2009, Master of Surgery in Neurosurgery from Universiti Sains Malaysia in 2018, and a Fellowship from the Royal College of Surgeons of Edinburgh in Neurosurgery in 2023. She received the FIENS-Bassett Fellowship in 2022 and undertook her International Travelling Fellowship in Pediatric Neurosurgery at Rady Children’s Hospital-San Diego, California, United States, under the mentorship of Professor Michael Levy. She served as Neurosurgeon at Sarawak General Hospital since 2018, and has been based in Miri Hospital since 2021 to facilitate the set up of Neurosurgical Service in the Northern zone of Sarawak.

Mr Ludivicus Omollo

Ms Maahi Rudawat

Maahi Rude, a 19-year-old aspiring medical student from Maharashtra, India, living with Spina Bifida and a 90% locomotor disability. Despite physical challenges, Maahi has demonstrated exceptional resilience and passion for healthcare. A dedicated advocate for disability rights, Maahi's recent research, "Beyond Barriers: Unveiling the Sexual Function Challenges in Individuals with Spina Bifida," was selected for presentation at the 30th International Conference on Spina Bifida and Hydrocephalus 2024. In addition to their academic pursuits, Maahi is also a talented musician and will be performing live at the event in Malaysia. Their long-term ambition is to pursue an MBBS degree, using their medical knowledge and personal experiences to break barriers in healthcare accessibility for individuals with disabilities. Maahi's work and advocacy aim to foster a more inclusive and compassionate future for those living with Spina Bifida.

Dr Majdah Mohamed

She is Public Health Medicine Specialist and has served in MOH for 30 years. She graduated with Doctor of Medicine from Malaysia National University (UKM) in 1992 and obtained her Master in Public Health from the same university in year 2000. She currently holds the position as the Head of Maternal Health Sector in Family Health Development Division, MOH since 2013. The Maternal health sector responsible for planning, implementation and monitoring of maternal health programme in the country, in particular at the primary health care setting. This sector also coordinates activities related to surveillance of maternal death in the country. She sits in National Committee for Confidential Enquiries into Maternal Deaths and has involved in research projects related to maternal health and family planning. She is currently strengthening the pre-pregnancy care in health clinics and committed to integrate mental health component into maternal health services at primary health care level.

Dr Malini Mahalingam

Dr Margo Whiteford

Dr Margo Whiteford CBE has been Chairperson of Spina Bifida Hydrocephalus Scotland (SBHS) for 22 years and was on the Board of the International Federation for 9 years (President 2013-2019). When Margo was born her parents were given a gloomy forecast for her future but she was able to attend mainstream school and subsequently attained a BSc in Pharmacology and studied Medicine at the University of Dundee. She worked as a paediatrician for 7 years and then specialised in clinical genetics until her retirement in 2019. Over the years Margo has helped SBHS raise thousands of pounds by competing in the London Marathon and persuading the famous chef, Gordon Ramsay, to be the charity’s Honorary Patron. In honour of her efforts for the charity and health service Margo was voted Scotswoman of the Year in 2009 and presented with a CBE from the King in 2017.

Dr Maria Lourdes Bolong

Maria Lourdes Bolong is a medical professional with expertise in both conventional and alternative healthcare. She graduated as a Doctor of Medicine from the University of Santo Tomas (1990) and has received specialized training in Medical Acupuncture from Helms Medical Institute in Berkeley, California (2011) and Ospital ng Maynila Medical Center (2009). Her commitment to compassionate care is further underscored by a Certificate in Palliative Care from Wales, United Kingdom (2008). Additionally, Maria Lourdes holds an M.A. in Counseling Psychology from Ateneo de Manila University (1998), with her thesis focused on the biopsychosocial factors related to adjustment to Spina Bifida. She's been in The Spina Bifida Support Group Foundation, Inc. since its inception (July 1998). This wide-ranging expertise enables her to provide a holistic and integrative approach to healthcare, addressing patients' needs across multiple dimensions.

Dr Matthias Axt

Dr Matthias Wolfgang Axt is a Senior Staff Specialist Consultant Orthopaedic Surgeon at the Children’s Hospital at Westmead in Sydney. He is a Senior Clinical Lecturer at the University of Sydney. He did his medical training at the University in Freiburg/Germany and completed his Medical Doctorate with the thesis: “Clinical results after Keller’s procedure with special regards on great toe power” in 1992. During his Orthopaedic training at the University Hospital in Heidelberg/Germany Dr Axt developed a special interest in the management of neuromuscular disorders with the focus on Cerebral Palsy and Spina Bifida. He passed his fellowship exam in 1995. Moving to Australia in 2002, he took on a staff specialist position at Armidale, NSW. In 2004 he joined the Children’s Hospital at Westmead, and the Cerebral Palsy Service, which he leads since 2012. He is a member of the NSW Paediatric Gait Analysis Service. From February 2016 to March 2022 he served as Head of the Orthopaedic Department. Dr Axt has an expertise to treat children with Cerebral Palsy, Spina Bifida, Arthrogryposis, muscular dystrophies and atrophies, and other neuromuscular conditions.

Ms Miza Marsya Roslan

Miza Marsya is an advocate for the persons with disabilities (PWD) community, with nearly 10 years of experience. Her journey began with raising awareness about her own condition, Spinal Muscular Atrophy (SMA), which broadened into a passionate advocacy for the rare disease community. She is one of the youth leads for the Malaysian Rare Disorders Society (MRDS), where she has taken an active role in youth empowerment, aimed at encouraging young individuals to engage actively in societal issues. She is currently pursuing a Bachelor's degree in Management, furthering her skills to enhance her impact in advocacy. She has also completed a two-year fellowship under UNICEF’s Young Leaders Programme where she was part of the Mental Health group. During this fellowship, the young leaders organised the Young Leaders Showcase in conjunction with World Children’s Day. In 2022, she was invited to share her insights as a panelist at the Women and Girls Forum 2022, focusing on the experiences and challenges faced by women and girls with disabilities. The results of this panel session were part of the UNFPA Report 2022. Through her work, she strives to be a force for change, advocating for inclusivity, and empowerment for the rare disease community and PWDs in general.

Mr Mohamad Firdaus Mohd Jafri

Mohamad Firdaus is a passionate individual who thrives on creativity and adventure. His interests include gaming, sports, singing, comic book collecting, and traveling.

Mr Mohammad Aminuddin

Assoc Prof Dr Muhammad Kamal Muhammad Abdul Jamil

Mr Mustaffa Sultan

WORK AS SENIOR PHYSIOTHERAPIST & HEAD OF PHYSIOTHERAPY UNIT AT HOSPITAL SULTAN ISMAIL.JB. OBTAINED A DIPLOMA IN PHYSIOTHERAPY IN 1996 AND BACHELOR OF SCIENCE APPLIED REHABILITATION (PHYSIOTHERAPY) IN 2012. HAVING 27 YEARS OF EXPERIENCE IN VARIOUS AREAS OF CLINICAL PRACTICE STARTING FROM HOSPITAL SULTANAH AMINAH JB, HOSPITAL PAKAR SULTANAH FATIMAH MUAR & CURRENTLY WORK AT HOSPITAL SULTAN ISMAIL JOHOR BAHRU. MY FIELD OF INTEREST IS PHYSIOTHERAPY & REHABILITATION IN PEADIATRIC AND ADULT NEUROLOGY AND APPLICATION OF DRY NEEDLING FOR ACUTE/CHRONIC PAIN MANAGEMENT. DESPITE RUTINE CLINICAL WORK, I M ACTIVELY INVOLVE IN PROVIDING CONTINUOUS MEDICAL EDUCATION FOR MEDICAL PROFESSIONALS, TRAINED MANY PHYSIOTHERAPIST STUDENTS UNDER MINISTRY OF HEALH & PRIVATE INTITUTIONS IN CLINICAL FIELDS AND AS EXTERNAL EXAMINER FOR FINAL YEAR PHYSIOTHERAPY STUDENTS.

Dr Nebiyat Tesfaye

Dr. Nebiyat Tesfaye, a native of Addis Ababa, holds a Doctor of Medicine from Hayat Medical College and a master's in public health from Santa Medical College. He began his career as a General Medical Practitioner at Debre Berhan Referral Hospital before joining St. Peter’s Specialized Hospital, where he worked in the pediatrics unit and coordinated care for spina bifida and hydrocephalus (SBH). In 2023, Dr. Nebiyat became the SBH Technical Director at ReachAnother Foundation, overseeing technical programs for prevention, treatment, and aftercare related to SBH across eight partner hospitals. Deeply committed to SBH advocacy, Dr. Nebiyat aims to raise community awareness about risk factors associated with spina bifida. His long-term vision includes enhancing food fortification and promoting folic acid use to reduce prevalence, striving for a future where every mother can deliver a healthy baby and families can thrive

Mr Ng Swee Guan

Ng Swee Guan is a Senior Educational Audiologist at the Special Education Division, Ministry of Education since 2007. Upon obtaining his Diploma in Education in 1993, he started his career as an English and Malay Language teacher. In 2002, he obtained his Bachelor of Education from USM and later on completed his Master of Audiology (M.Aud. Clinical) from Flinders University, South Australia (2007). Besides his active involvement in hearing awareness and screening programs under the MOE Outreach program in Malaysia, he also has extensive experience working with South Australia Government providing hearing healthcare services mainly for children.

Ms Nor Azizah Mohamad

Dr Nor Hanim Mohamad Hanapi

Mdm Nor Khairunnisa Mohamad

Nor Khairunnisa Mohamad is an accomplished Occupational Therapist at the Hospital Tengku Ampuan Afzan (HTAA) ,Kuantan under the Ministry of Health Malaysia (MOH) She obtained her Diploma in Occupational Therapy from Universiti Teknologi MARA (UiTM) in 2005 and later earned a Bachelor of Occupational Therapy (Hons) also from UiTM in 2008. Since beginning her career, Nor Khairunnisa Mohamad has held significant roles including Head of the Occupational Therapy at HTAA.Her contributions extend to her position as the Head of Occupational Therapy in Pahang. Throughout her career, Nor Khairunnisa has worked extensively in hospital settings, focusing on work rehabilitation programs and return-to-drive rehabilitation.Her approach combines innovative therapy techniques with a deep commitment to patient-centred care, helping individuals regain maximum independence post-injury. Her work is driven by a passion to improve outcomes and quality of life for her patients, making her a respected practitioner in her field.

Ms Norazah Haron

Ms Norsyafiqah Samsuri

Ms Nur Khalilatul Amla Kamal Subki

Ms Nur Syafiqah Mustaffa Al Bakri

Dr Nurulhuda Zakari@Zakaria

Dr Ooi Ai Lee

Dr Poongkodi Nagappan

I graduated from University Malaya in 1999, completed my master’s degree and Malaysian Board of Urology certification before leaving to the Royal Manchester Children’s Hospital for an 15-month fellowship to develop my interest in Pediatric Urology. Since my return to Malaysia in 2015, I have worked in Selayang Hospital (2015-2017), Kuala Lumpur Hospital (2018 to present) and Tunku Azizah Hospital (2018 to present), providing the full range of emergency and elective pediatric urology services from neonates to adolescent patients with congenital conditions of the genitourinary tract, including urodynamic evaluation. I also provide outreach pediatric urology services to government hospitals, mentoring young urologists and pediatric surgeons interested in pediatric urology conditions. In addition, I am fully involved in adult urology service in Kuala Lumpur Hospital, managing women with urological conditions, children who need transition care, microsurgical procedures, as well as patients with urinary tract stones, kidney and bladder cancer, and reconstructive procedures in patients with bladder and urethral conditions.

Dr Punithamalar Sundrasegaran

Dr. Punithamalar Sundrasegaran is the Head of Department and Rehabilitation Medicine Physician at the Rehabilitation Medicine Department of Hospital Keningau. She holds a Bachelor of Medicine and Bachelor of Surgery (MBBS) from AIMST University, Kedah, and a Master of Rehabilitation Medicine (MRehabMED) from Universiti Malaya. Dr. Punithamalar has contributed significantly to the field through various publications, including the upcoming "Handbook to CCI Points" (2024, UMPress). Her research on "Upper Extremity Status in Patients with Chronic Tetraplegia" was published in The Malaysian Journal of Medical Sciences, while her work on rehabilitation challenges and innovative injection techniques has been featured in notable journals and conferences. A member of the Malaysian Association of Rehabilitation Physicians (MARP) and a committee member of IMRSG, she is also involved with the Musculoskeletal/Pain Rehabilitation SIG Malaysia. Dr. Punithamalar’s special interests include musculoskeletal and pain rehabilitation, as well as spinal cord injury rehabilitation.

Dr Quentin Johnson

Quentin is a professional with 46 years of New Product Development, Quality Assurance, Food Safety and Regulatory Affairs experience in the milling and baking sectors of the food industry. For the past 22 years, he has provided technical assistance in 97 countries worldwide in the design, development and implementation of staple food fortification programmes with particular reference to wheat flour and maize meal fortification. Currently he provides consulting services through his own business, Quican Inc. to International UN Agencies, National Donor Aid Agencies and international NGOs on staple food fortification. Clients include The Food Fortification Initiative, Smarter Futures, Global Alliance for Improved Nutrition, Helen Keller International, Nutrition International (formerly MI), Tufts University, UNICEF, USAID, World Bank, World Food Programme, World Health Organization, World Vision Canada as well as the Food Industry, specializing in New Product Development, Technical Services, Food Safety and Quality Assurance. Current responsibilities include Coordinator Training & Technical Support Group, of the Food Fortification Initiative; Food Technologist, Food Aid Quality Review Team, Tufts University. Quentin is a consultant on food fortification for international agencies. In 2011, Quentin received an Honorary Degree DLL honoris causa from the University of Guelph, Canada for his contribution to the advancement of staple food fortification around the world.

Ms Raja Nurul Faizah Raja Hamzah

Prof Dr Rashidah Ismail @ Ohnmar Htwe

Prof Dr Richard Finnell

Richard H. Finnell holds the William T. Butler, M.D. Distinguished Chair in the Center for Precision Environmental Health at Baylor College of Medicine. A paediatric geneticist, Dr. Finnell has academic appointments in the Department of Molecular and Cell Biology, the Department of Molecular and Human Genetics, and in the Department of Medicine. During his 44+-year career, he has authored over 400 peer-reviewed publications in journals such as Science, Nature Genetics, Nature Cell Biology, PNAS and Developmental Cell. The current focus of the laboratory is to utilize gene-editing approaches in stem cells to treat complex congenital malformations and unique genetic defects in the one carbon metabolic pathway. His ongoing research efforts are funded by multiple grants from the US National Institutes of Health.

Ms Rusidah Selamat

Ms Rusidah currently serves as the Director of Nutrition Division, Ministry of Health, Malaysia. She was previously the Deputy Director (Nutrition Policy and Planning) where she led multiple teams of programme planning, development and evaluation especially for nutrition surveillance, global nutrition as well as national coordination of food and nutrition. Within her 33 years of working experience in the field of nutrition, she was also the Deputy Director for Nutrition Operation at the Ministry of Health Malaysia, a senior state nutritionist in several states and a researcher at the Institute for Public Health, Kuala Lumpur. She also actively involves in the national and regional nutrition committees. She has been in the WHO Guideline Development Group – nutrition actions since 2013. In 2014, she was awarded as a Fellow from the Nutrition Society of Malaysia.

Ms Ruth Nalugya

Ruth Nalugya is a distinguished professional with a multifaceted background and a profound dedication to diversity, inclusion, and equity. As the Executive Director and founder of the National Umbrella Organization for Spina Bifida and Hydrocephalus Association-Uganda, she champions initiatives that empower individuals with disabilities, safeguarding their rights and wellbeing. Ruth's influence extends to her roles in the National Technical Working Group on Food Fortification with the Ministry of Health, and the Technical Working Group on Special Needs and Inclusive Education with the Ministry of Education and Sports. Her contributions as a social scientist are notable, with several research publications to her name. Ruth holds a Diploma in counseling, a Diploma in Education, a Bachelor's degree in Development Studies, a University Certificate in Human Resource, and certifications in International Leadership and Organizational Behavior in addition to Social Protection, and Disability Inclusion. Currently, she is pursuing a Master's in Disability and Inclusive Development. Ruth is committed to advocating for equal opportunities and creating an inclusive society where individuals can overcome challenges and thrive.

Dr Santosh Karmarkar

Dr. Santosh is a renowned paediatric surgeon currently working at Lilavati Hospital Mumbai and actively involved with the Spina Bifida Foundation, India. His impressive academic background includes an MBBS, MS, and MCh earned at KEM Hospital, Mumbai. He began his career as a full-time paediatric surgeon at Sion Hospital and Wadia Hospital, serving from 1991 to 2003. Since 2003, he has held the esteemed position of Consultant Paediatric Surgeon at Lilavati Hospital. Dr. Santosh is a highly respected figure in his field. He has authored numerous publications in leading medical journals, trained many students who have risen to hold senior positions around the world, and is frequently invited to deliver guest lectures. His experience extends internationally, having served as a visiting fellow in the UK and USA, and a past visiting professor at the University of Genoa, Italy. Dr. Santosh's dedication goes beyond the operating room. He previously served as the Secretary of the Indian Association of Pediatric Surgeons and is a founding trustee of the Spina Bifida Foundation. His areas of particular interest include urinary incontinence and holistic care for patients with spina bifida.

Dr Sharon Anne Khor

Dr Sharon Anne Khor graduated as a medical doctor and completed Masters of Rehabilitation Medicine at University Malaya, Kuala Lumpur. She was responsible for setting up the Department of Rehabilitation Medicine in Hospital Sultan Ismail Johor Bahru in 2009 and heads the department. She was appointed as the Johor State Advisor for Rehabilitation Medicine Services since 2010. She was a visiting specialist for Hospital Sultanah Aminah from 2009 to 2019. She has published research abstracts at International and National Conferences since 2008. She was an invited Speaker for lectures in various Regional and National levels conferences. She received Excellent Service Award from Johor State Health Department in 2010 and 2018. She is actively involved with educational and community activities for people with disabilities since 2004.

Ms Sharon Bustrak

Sharon conducts research and data analysis concerning global nutrition, milling, and fortification. Additionally, Sharon supports FFI’s United States corn masa flour project and the planning, implementation, and monitoring of fortification programs in the Asia-Pacific, Latin American, and Central Asian regions. Sharon holds a Master of Public Health in Epidemiology from Emory University and has experience living and working in the Middle East, Africa, and Asia in health education, clinical, and research settings.

Ms Siti Zulaikha Mohamad Noor

Graduated from UKM, Bachelor of Occupational Therapy with Honours in 2011. Continue to work as lecturer at Kolej Islam Sains Teknologi (KIST) from 2011 until 2013, teaching in OT. Currently work as Occupational Therapist in HRC from 2014 until now, and 5 years in paediatrics rehabilitation. Involved in variety programs in paeditarics, such as Boot Camp (2018) as starter for vocational exploration among HRC paediatrics patient, and become part of team during sharing for awareness and promotion in a decade celebration for HRC paediatrics rehabilitation, through mass media and live talk sharing. Enthusiastically learning to strengthen the theory and knowledge in paediatrics through variety of courses over the time.

Dr Sivanesan Govindasamy

Dr. Sivanesan Govindasamy currently serves as the Principal Assistant Director at the Perak Health Department and has accumulated 31 years of experience as a civil servant. His educational background includes a PhD in Public Administration from the University of Fort Hays, USA, an MPA in Public Administration from USM, and a BA (Hons) in Humanities from USM. Additionally, he holds a Diploma in Physical Education from UPM/Canadian Association of Health, Physical Education, and Recreation, a Diploma in Sports Management from the ASEAN Athletic Association, a Diploma in Public Management from INTAN, and a Diploma in Education from Temenggong Ibrahim Teachers College. In terms of sports involvement, he is an International Athletic Technical Official with IAF, a BWF Asia Pacific Badminton Tutor for Special Olympics, and has been a Para Athletic Technical Official for 10 years. He has been serving as a Malaysian Athletic Federation (MAF) Technical Official for 33 years and is the Chairperson of the Special Olympics National Advisory Board for Athletics. Additionally, he is the President of Special Olympics Perak, Vice President of Persatuan Olahraga Para Malaysia, Secretary of Persatuan Olahraga Para/OKU Perak, and President of Para/OKU Athletics Kinta. His contributions have been recognized with several honors, including Head of Delegate for the Special Olympics World Games in Berlin, 2023, where Malaysia’s team achieved its best performance at an international event, earning 4 gold, 5 silver, and 9 bronze medals. He was awarded the Anugerah Shakam by Majlis Sukan Negara with a cash prize of RM 95,000, as well as the Anugerah Khas Sukan Negara 2023 for the best-performing national contingent. Furthermore, he has been appointed as Assistant Head of Delegate for the Special Olympics Winter World Games in Turin, Italy, in 2025 for the floorball team.

Ms Sneha Sawant

Ms. Sneha Sawant is a dedicated social worker and advocate for persons with disabilities, currently serving as the Chief Coordinator at the Spina Bifida Foundation in India since November 2020. With a Master's degree in Social Work from S.N.D.T. Women's University, Mumbai, and a background in accounts from Mumbai University, Sneha brings a unique blend of skills to her role. Prior to her current position, she served as a Medical Social Worker at Dr. M. L. Dhawale Trust Hospital in Dahisar and Palghar, where she contributed to research projects focused on the efficacy of homoeopathic intervention in influencing academic outcomes in children with disabilities. Sneha has also worked as a Senior Trainer at Swaddhar Finaccess in Chembur, Mumbai, demonstrating her commitment to community development and empowerment. Her passion lies in areas such as disability rights, health, especially birth defects, rehabilitation, and humanitarian actions, reflecting her unwavering dedication to improving the lives of those in need. Based in Mumbai, India, Sneha continues to make meaningful contributions to the field of social work, leaving a lasting impact on her community and beyond.

Dr Srihari Singaravel

Dr. Srihari Singaravel is a well known Paediatric Urologist and the first Paediatric Surgeon to graduate from the University of Malaya. With over 14 years of dedicated service in Malaysia, Dr. Srihari Singaravel is certified by the National Specialist Register and is the only dedicated Paediatric Urologist at UM Medical Center. After gaining full registration following two years of practice in their home country, Dr. Srihari Singaravel has been a pivotal figure in advancing paediatric urology in Malaysia. Their expertise extends to preparing talks for medical officers, authoring research publications, and designing examination questions for surgical trainees. Recently granted Permanent Resident status in Malaysia, Dr. Srihari Singaravel continues to contribute significantly to the medical community, fostering education and excellence in paediatric urology.

Ms Su Xiao Vin

With 17 years of experience as a pharmacist in a government hospital, she have overseen four distinct in-patient pharmacy units of a hospital and currently heading pharmacy unit at a polyclinic. Recognized for her dedication, she received the Excellent Service Award in 2012 and 2019. Beyond her professional role, she finds fulfillment serving in various church ministries, notably dedicating over a decade to children’s ministry. She has mentored volunteers, organized impactful events with the ministry core team, and also actively participated in community outreach projects. Since 2020, she has led a small working adults church group. She joined SiBiAM in 2022. Her passion to inspire and support individuals with Spina Bifida led her to form a local Kuching-Sarawak SB support group in December 2023 and made virtual connections with SB adults nationwide.

Hj Syed Abd Rahman Syed Hassan

Founder and Director of Kids Scuba dive school in Malaysia. Hj Syed Abd Rahman is the Chairman, Accessible Tourism Malaysia WG14 with the Ministry of Tourism and Culture MOTAC Putrajaya. Hj Syed is the Ambassador DiveHeart Malaysia, a Non-Profit Organization based in Chicago US to train People with Disability PWD on Scuba Diving and Water Therapy. Hj. Syed loves teaching and motivating Kids and Teens in the sports of Scuba Diving. His passion in the sport has motivated him to start Kids Scuba in 2004. Scuba diving has changed his perception and awareness of the marine environment. The importance to instil conservation awareness to the kids and teenagers while being comfortable with children. Syed is committed to share knowledge with them to help make the dreams of many who wants to be a scuba diver into a reality. His dedication and commitment to promote scuba diving for Kids, Teens, Orphan and Disabled Comminity has earned Many International Awards & Recognitions in Malaysia.

Dr Sylvia Roozen

Assoc Prof Dr Tan Chai Eng

Assoc Prof Dr Tan Chai Eng is a family medicine consultant and has been a lecturer with the Department of Family Medicine, Universiti Kebangsaan Malaysia since 2011. She holds a PhD in Health Education and Communication, besides her clinical specialty in Family Medicine. Assoc Prof Dr Tan has a personal interest in the area of home care and primary palliative care. She has been working with the Home Care Unit of Hospital Canselor Tuanku Muhriz, the teaching hospital of the Faculty of Medicine, Universiti Kebangsaan Malaysia, since 2013. She conducts multidisciplinary team meetings with the Home Care Unit which provides care for patients with reduced mobility and diverse health conditions. She also has experience working with community palliative care providers. Her clinical experience in the community underscores the importance of good transition care for patients with complex health needs, as well as patient and caregiver education for self care at home.

Dr Tan Lay Tin

Dr Tan Lay Tin was gazetted as MOH paediatric specialist since 2016. She studied medicine in University of Malaya, granted with the scholarship from Lee Yan Lian Foundation. In 2015, she obtained the membership from Royal College of Paediatrics and Child Health, United Kingdom. Subsequently, she ventured into the fellowship training of General Paediatric and Child Health from 2019-2022, with special interest in paediatric neurodisability, receiving training in Hospital Pulau Pinang, Hospital Tunku Azizah Kuala Lumpur, Hospital Rehabilitation Cheras and Hospital Manjung. She also enrolled her training in Diploma of Paediatric Neurodisability under NHS, Sheffield UK. She is the member of Malaysia Paediatric Association, Malaysian Neuroscience Society. She has won best poster rewards in 2007, 2015, 2016 in national conference; full travelling fellowship award from the Ministry of Foreign Affair Singapore And St Jude Viva Foundation for Children with Cancer, in 2009; and few first and second prizes in clinical audit Hospital Seberang Jaya and Hospital Pulau Pinang from year 2016-2018. She also involved in various researches as primary or co-investigator. She is currently working as General Paediatrician and GPCH specialist at Hospital Pulau Pinang. She completed training in Diploma of paediatric neurodisability, NHS (Sheffield, UK) and works with children with neurodisability, providing comprehensive care, together with multidisciplinary team in various combined clinic.

Dr Tan Lee Na

Dr Tan Yew Wei

I joined University Malaya (UM) as a Senior Lecturer in Surgery, as well as University Malaya Medical Centre as a Consultant Paediatric Surgeon, since January 2023. The first 20 years of my medical career were in the UK. My postgraduate training in General and Paediatric Surgery had spanned over 13 years across various centres and were finally consolidated in London. This was followed by a further subspecialist fellowship in Paediatric Colorectal Surgery in London (UK) and Columbus (USA). I was appointed as a consultant in 2019. Apart from patient care, I have developed passions in medical education and healthcare innovations which had driven me to obtaining postgraduate qualifications in these areas. I also enjoy publishing and presenting my research works in various aspects of paediatric and colorectal surgery. For the past 2 years, I have been a part of the NHS Clinical Entrepreneur Programme (UK), providing me with the opportunities for learning, developing, and scaling of healthcare innovations through commercialisation. Since returning to Malaysia, I continue to engage with the UM Deep Tech Programme and have been leading our team in developing the CAFÉ app. In education, I am a lecturer and examiner in the undergraduate UM Medical Programme. I am the coordinator for UM Silent Mentor Programme, Undergraduate Examination Bank, and Student Holistic Empowerment Course (Surgical Spotlight) at the Faculty of Medicine. I am passionately involved in clinical, academic and simulation training for the postgraduate students in our national Master Programme in Paediatric Surgery (MPaedSurg). Internationally, I am an Instructor for the Advanced Paediatric Life Support Course.

Dr Teh Chee Ming

Dr Teo Shu Ching

Graduated from University of Western Ontario (partnership with IMU) 2000. Passed Master of Medicine (Anaesthesiology) (National University of Singapore) in 2005. Worked in Hospital Umum Sarawak and Hospital Sibu before I joined HKL for Paediatric anaesthesia training in 2009. Underwent training in Birmingham’s Children Hospital for a year in 2010 before returning to Hospital Umum Sarawak till now. Special interest in TIVA, EEG monitoring and regional blocks in children. As an administrator and anaesthesiologist in a general hospital, jobscope will include expansion of services that will benefit our patients within the region. I’m also an MSQH surveyor.

Prof Dr Venkat Sripathi

Worked for five years at Institue of Child Health and Hospital for Children Egmore, Chennai Full Time Consultant in Paediatric Urology & Director Fellowship Program – Apollo Hospitals Chennai for 32 years Adjunct Prof - Tamil Nadu Dr MGR Medical University Visiting Professor at Princess Margaret Hospital for Children in Perth Lead Examiner for Master’s in Paediatric Surgery - University Malaya Pioneered Robotic Paediatric Urology in India – have completed 340 procedures till date Have conducted seven workshops in paediatric urodynamics and five operative paediatric urology workshops Have delivered seven named orations in India and abroad Co-ordinated the successful separation of Ischiopygopagus twins in 2013 Awarded best video prize at ESPU 2019 Lyon France Delivered key note lecture at NARUS 2022 – Las Vegas USA Have sixty publications

Mdm Victoria Sandoval Cáceres De Lara

I am a mother of two, Martin (15) and Agustina (13), wife and lawyer. I was born with SB in 1975. In 1995, along with my mother and other 4 mothers, we founded the Asociación Guatemalteca de Espina Bífida -AGEB-

Dr Wan Juhaini Paizi@Fauzi

Dr. Wan Juhaini Paizi is a dedicated Rehabilitation Medicine Physician with a passion for helping patients achieve their best possible outcomes. With a focus on care for individuals with strokes, traumatic brain injuries, cerebral palsy, spina bifida and other complex conditions, Dr. Wan works at Hospital Queen Elizabeth to provide compassionate and evidence-based care. A graduate of University Malaya Class 2019, always aiming to contribute to the field and support colleagues and patients alike.

Mr Yee Wing Wei

Yee Wing Wei, a seasoned physiotherapist, has dedicated 13 years to his profession at Hospital Rehabilitasi Cheras. With a foundational year of experience at Hospital Kuala Lumpur and Klinik Kesihatan Jinjang, Yee's career has been marked by his specialization in pediatric care. For the past 11 years, he has worked extensively with children with disabilities, fostering their development and enhancing their quality of life through tailored rehabilitation programs. Yee holds credentials in robotic-assisted gait training and hydrotherapy for children, showcasing his commitment to innovative therapeutic techniques. A graduate of Kolej Sains Kesihatan Bersekutu, Yee is currently advancing his expertise by pursuing a degree in physiotherapy. His blend of practical experience and continuous learning positions him as a compassionate and skilled practitioner dedicated to the well-being and progress of his young patients

Dr Yusma Asni Yusmido

Graduated MD from Hospital Putra Malaysia in 2005, further in Master Rehabilitation Medicine in University Malaya and graduated in 2014. Work as Rehabilitation Medicine Physician in Hospital Tengku Ampuan Afzan since 2015. Completed training for area of special interest in paediatric Rehab for one year at Queen Sirikit National Institute of Child Health and Hospital Rehabilitasi Cheras in July 2023 with special interest in rehabilitation program for pre and post operation in cerebral palsy patient.