AUTISM SUNDAY COMMEMORATION
Proceedings of the Event held on 13th February,2022
To view the art work by children who participated click here | click here to view the event photo gallery
Rev. Fr. Vargheesh Antony SJ,
Director, Dr. Ambedkar Cultural Academy, Madurai
Welcome address and introduction to the facility
Rev. Fr. Vargheesh Antony SJ gave a warm welcome to the dignitaries and gave an introduction about JAICARE, Jesuit Antonyraj memorial Inter-disciplinary Centre for Advanced Rehabilitation and Education (JAICARE). Fr. Vargheesh explained about the noble work of Late Rev. Fr. Antony Raj who worked relentlessly for the socially and economically downtrodden from the southernmost part of India, who established the Dr. Ambedkar Cultural Academy (DACA) where the JAICARE facility has been established. JAICARE's first work being on autism, is planning to extend its work to rehabilitative services for children with special needs as a full-fledged facility from the 16th of February, 2022. Eventually JAICAREwill evolve to be a centre for advanced rehabilitation and education, with emphasis in developmental paediatrics, extending its services to rare genetic diseases such as Duchenne Muscular Dystrophy, in collaboration with relevant experts and like-minded institutes.
Rev. Dr. Danis Ponniah, SJ,
The Provincial, Madurai Jesuit Province
Opening remarks and blessings
Rev. Dr. Danis Ponniah explained how JAICARE is proposing to contribute to the medically and genetically marginalised through a collaboration with Dr. Raghavan, the Loyola college society and Japanese collaborators making the vision of Late. Rev. Fr. Antony Raj's turning into reality. Rev. Dr. Danis Ponniah mentioned that the families of children with autism go through great agony and clinical work by JAICARE will be of great help to these children and their parents. Rev. Dr. Danis Ponniah prayed for God Almighty's blessings for the work of JAICARE to be successful.
Dr. K. Raghavan,
Consultant Pediatric Neurologist
Presentation on clinical study results as published in BMJ Neurology*
Dr. Raghavan explained the clinical study results of “Improvement of behavioral pattern and alpha-synuclein levels in autism spectrum disorder” published in BMJ Neurology Open (http://dx.doi.org/10.1136/bmjno-2021-000203) . He summarized that the novel strain AFO-202 of black yeast Aureobasidium Pullulans produced ß 1,3-1-6 Glucan, the Nichi Glow improves sleep reported by parents and behaviour in children with ASD as evaluated by blinded physiotherapists. Objectively it improves endogenous secretion of melatonin and alpha-synuclein. Most importantly it beneficially reconstitutes the gut bacteria. There is control of harmful bacteria like Enterobacter which secrete curli and amyloid leading to accumulation of disease-causing proteins. This beneficial action not only helps further worsening of the disease but since Nichi Glow has been in consumption by Japanese for decades as a safe food supplement, continuous supplementation will help in the improvement of symptoms in neurodevelopmental disorders like ASD and also has potential in neurodegenerative diseases such as Parkinson’s disease and Alzheimer’s disease.
He ended with a note that larger clinical studies are to be pursued to evaluate such prophylaxis in long term. He answered to questions raised from the virtual delegates and on-site attendees to clarify on the unique production method of this beta glucans as a exo-polysaccharides, water solubility, easy to mix with food for consumption and that improvement of sleep and cognition being key findings by the family, longer studies in specific subsets may reveal which segment of children will be benefitted. Overall, he insisted that an early intervention is the key.
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Panel discussion & interaction - Dr. Samuel JK Abraham (Moderator), University of Yamanashi, Japan. doi:10.1136/bmjno-2021-000203
Panelists
Mr. Takashi Onaka,
Founder, Sophy Inc.,
The manufacturer of
Nichi Glucan - Range of products, Japan
Mr Onaka explained his association with Prof Noboru Fujii (late) of faculty of Agriculture, Miyazaki University that started in the year 1989, and about the work of Dr. Fuji who first isolated the black yeast and successfully cultured them in a reproducible manner from which the Nichi Glow is now produced. Since Mr Onaka was technically from water purification background, this black yeast cleared dirty water into better one which they thought may help people endure healthy condition, but they didn’t imagine or foresee these benefits with gut microbiome or neurological conditions. He was amazed by the passion of Prof Fujii in science, especially on his inquisitiveness about the poly-extremo tolerant nature of the specific strains of Aureobasidium Pullulans. He added that the involvement of Dr Fujii in scientific pursuits found a good match with his technicality and industrial scale up from lab to GMP production, leading to what we are today.
Now, after almost 35 years, he is glad to have played a modest contributing role to this feat, as this outcome motivates his team further to evaluate numerous novel strains in their library in Kochi, Japan, which they would keep exploring in association with a global team of scientists and clinicians.
Rev.Dr. Francis Xavier, SJ
Vice president & Rector,
Loyola College,
Chennai, India
Jesuit Missionaries’ contribution to India, especially to the South was Education and Medicine – The first university college in India to be established is the St Joseph’s College in Trichy (founded in 1844). Jesuits global stand since 1960s has been improving the poor and the marginalized. Key to empowering them is Education.
Philosophy of Jesuits Mission is Educate – Enlighten/Employ and then Empower. There are mover 200 universities and thousands of Higher Seconday Schools run by the Jesuits. Some Jesuit institutions, such as Canisius College and John Carrol University (in USA) are conducting research on Autism. Jesuit universities such as St Joseph’s University in Philadelphia is one of the 30 best universities for students on the autism spectrum disorder (ASD) and another Jesuit institution, University of San Francisco has made a breakthrough in autism in predicting ASD from the age of 3 months. Now in Madurai, through international collaboration, JAICARE is focusing on the medically marginalized, will undertake the mission of i. Acquiring knowledge; ii. Sharing research expertise; iii. Skill development; and iv. Extending help to the needy who cannot otherwise afford medical facilities – So, the watchword is Research and Reach out. Jesuits' focus, so far having been socially and economically marginalized and discriminated people: socially discarded, economically broken, and politically exploited people – to bring up the people at the bottom of social pyramid to the pinnacle of social pyramid as leaders, now a new dimension has evolved, focus on medically disadvantaged children – thanks to medical experts from India and abroad and the administration of DACA in Madurai for extending help to the autism children. The future plan is Rehabilitation and pre-emptive methods for the affected children. At the same time awareness and psychological help to cope with situation for the parents.
Prof. Jagannatha Rao
Pro-Chancellor, KL University,
Vijayawada, India
Prof. Rao lauded the efforts of the inter-disciplinary work between the Indian team led by Dr. Raghavan and the Japanese team. He said that KL university is planning to academically and scientifically collaborate with JAICARE. He recalled the discussions with NCRM on the application of these beta glucans for bringing down the inflammatory response in COVID-19 published in peer reviewed journals (https://doi.org/10.1016/j.biopha.2021.112243) and once again appreciated the work of JAICARE in Autism.
Dr. K. Ramesh Shankar
Consultant Psychiatrist & Director,
NHS Lincolnshire Partnership, United Kingdom
As a psychiatrist, he commented that the results of the study are very encouraging and based on his experience he considers this is something worthy to plan larger studies with longer follow-up as a global multi-centric study, especially he commented on the results in gut microbiota which at this are under peer review.
He also adviced to start collaborating with like-minded institutes globally to learn from each other; Todays panel having experts from Japan, USA, Mauritius and Srilanka, is a good start, so building such networking to gain a mutually beneficial association for the sake of these children, whose quality of life even if improves in terms a few parameters like sleep, that will be great relief to the parents, specially the mother, whose sleep quality will improve, he added.
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Dr.Gopi Kitnasamy
MJF Charitable Foundation,
Srilanka
The MJF Charitable Foundation is the charitable arm of the world famous Dilmah Tea. The vision of its founder Mr. Merrill J. Fernando is “Business is a matter of human service”. The foundation represents an alternative economic model, it transcends charity and corporate social responsibility, one that is a genuinely sustainable and fair way of doing business. The foundation has supported over 100,000 beneficiaries.
The foundation has been providing daily education and therapy services for over 450 students with developmental disorders across four centres in Sri Lanka and the National Centre for Children with Cerebral Palsy and other Developmental Disorders (NCCCPDD) was started in 2016. On the 6th October 2020, we launched the disABILITY Screening App/online platform as a post COVID response to provide tele-screening & therapy services to children with developmental disabilities in Sri Lanka. There are more than 250 families who are receiving the teletherapy services through this platform and many of them are from remote areas where they have limited access to therapy services.
As a parent of a child with CP and a specialist in rehabilitation, he was very excited and thrilled to know about the outcome of this study, particularly that this food supplement can help balance the gut microbiome. He added that this has a lot of potential for further research and studies on many neurodevelopmental disabilities, as the human gut microbiome is a huge microbial community that plays an irreplaceable role in human life and many studies has shown that balanced gut microbiome can be helpful in modulating neurological conditions.
He commented that this gives a lot of hope to families of these children and the clinicians working with them and appreciated the Indo-Japan Collaborative team for their work and efforts.
Dr. Ashwamed Dinassing
Director of Health Services;
Public Health-
Mauritius
Moderator:
Welcome Dr Ashwamed and we thank you for joining; As a clinician and as a director of health services, handling public health of govt of Mauritius, where I understand that there are around 10000 children with Autism, I have two questions to; the first one is: can you please tell us about the govt policies or provisions to take care of children with disabilities, especially with Autism; second question is since you have had your medical education in India and now practicing in Mauritius for almost 30 years, your opinion on the study outcome and any advice to our research and also JAICARE we would appreciate
Dr. Ashwamed Dinassing: Being a public health services director of Mauritius where there are approximately 10000~12000 children with ASD, this is a very interesting topic for us and the mothers wouldn’t know if their child is autistic when born. So the light shown by the study will be of great help for the children and their families for an early intervention. In Mauritius, social security, health and education are three departments which take care of the children with autism and there is a special school for children with autism and there are centres which offer all rehabilitative therapies.
As Dr Ashwamed had his education in India, he understands both worlds and this study is simply a breakthrough and would be curious to check if there could be benefits to children in Mauritius. Since the food habits between India and Mauritius are different, he would be interested in the gut microbiome study in a similar manner in Mauritius.
Prof. Muralidhar L. Hegde
Houston Methodist Reserch Institute,
Texas, USA
Moderator:
“Now that we have been able to report in this pilot study that in children with ASD, their plasma Alpha-Synuclein levels increased which correlated with objective improvements; However the mechanisms we hypothesize is that the beta glucans enhancing NK cells activity which might have cleared the deposited Alpha-synuclein in the enteric nervous system which have come out circulating, leading to their levels increasing in the plasma; May I ask you on your thoughts and suggestions for further research how to explore this to add more clarity”
Prof. Muralidhar L. Hegde:He is being one of the associates to have developed alpha-synuclein inducible cell lines SHSY-5Y, added to the comment of Dr. Raghavan that a mere protein increase may not be protective and insisted that we need to find if the protein is protective or pathogenic. He explained how things are happening in several institutes in an isolated manner, like basic work on alpha synuclein was associated with Autism and pointed to the significance of the present work that it connects the dots and more importantly has yielded a beneficial clinical outcome. The stress associated phenomenon which gives rise to these curli proteins and amyloids and the genomic instability, all these need further research on whether the natural compound beta glucan has been of help in autism by working on the stress, DNA repair and the other multiple pathways.
Prof. Nobunao Ikewaki
Kyushu University of Health & Welfare,
Nobeoka, Japan
The AFO-202 in their study proves it as an excellent prebiotic that apart from enhancing the NK cells which he guess has helped clear the alpha-synuclein deposits in the enteric nervous system, He shared his thoughts on the potentials of this novel beta glucans directly or indirectly to act in the brain through microglia which has to be evaluated in appropriate models. They are starting research on SH-SY5Y Neuroblastoma cell lines which is at the initial stage, but he also proposes to study in Astrocytoma cell line. Importantly evaluating whether the alpha-synuclein produced by these cell lines under various conditions are misfolded or normal, if so we need to check whether there is any difference in their proportion, that he thinks will hold the key to unlock several fundamental mechanisms causing cellular stress and method of relieving them.
Hon'ble Justice G.R Swaminathan,
High Court, Madurai, India
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Chief Guest Address
Justice Swaminathan lauded the efforts of the Jesuits through JAICARE in having coming forward to take care of these children with ASD and suggested that JAICARE’s research should involve the entire family in a study or research. He narrated how siblings of children with Autism may feel left out since the parents entire attention might be on the child with autism. He narrated that for a child with autism, religion, caste, nation has no relevance. He quoted Fr. Varghese’s words that the kingdom of heaven belongs to children and it really belongs to the children with autism. Now since autism has been recognized in the disability act, it has become that the rights of a child with autism should be held up. Since it is the duty of the government, state and the private to take care of children with autism, JAICARE’s work carries more significance. He said he feels thrilled seeing the results of the study and the presentations and he was filled with optimism quoting Robert Frost, that though there are miles to go, the first step has been taken in the right direction.
Rev. Fr. S. Marianathan, SJ
,
Rector, St.Mary’s Higher Secondary School, Madurai, India. &
Dr. Mrs. S.S. Sundaravalli,
Principal, Bala Siksha Sahayata Lakshmi Vidhya Sangam TVS, Madurai, India.
Have kindly consented to be the guests of honour and distribute prizes.
Dr. Muzafar Gani Abdul Wahab,
McMaster University, Hamilton, ON, Canada
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Closing Remarks
Autism is increasingly become more prevalent, even higher than Tuberculosis. It has become a huge social burden. Since there is no simple medicine or cure, it management is highly complex. The diagnosis and the treatment need a multi-dimensional approach. After listening to how the gut microbiome influences the brain, he appreciated the JAICARE team for the time and resources invested in the study, which is a stepping milestone for children with autism in India. Though it is a pilot study the results have showed it is effective, a multi-centric trial with international collaborations for studying the effects of the beta glucan both in short and long term are worthy, he added.