DUCHENNE AWARENESS DAY 2022
Proceedings of the Event held on 4, September 2022
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Rev. Fr. Vargheesh Antony SJ,
Director, Jaicare, India ; Dr. Ambedkar Cultural Academy, Madurai, India.
Welcome address and introduction
Welcomed the gathering both in person and the virtual delegates, panelists and gave a background of the activities and future plans of social and health care work to be undertaken by Jaicare.
Presentation by rehabilitation specialists.
In the session of technical presentation by rehabilitation specialists and physiotherapists, Mr Sivakumar (Jaicare, India) presented the two months interim data in which Neu REFIX beta glucan consumption had yielded encouraging outcome in patients with Duchenne muscular dystrophy (DMD) and informed about the six-months clinical trial that is underway. Mr. Daniel (Jeevan Foundation, India) presented the work undertaken in Myopathy Clinic, Tirunelveli especially about the hydrotherapy and its advantages for patients with DMD. Mr. Elango (Jaicare, India) gave an overview of the care needed by DMD patients at various stages and Ms Florence (DASK, Kenya) narrated the situation in Kenya of DMD patients and the support rendered by Disability Advocacy and Services Kenya (DASK). Dr Henry Humba (Assistant director and Head of department, Neurosurgery at Benjamin Mkapa Hospital and University of Dodoma) who served as a panelist shared the situation in Tanzania and explained that the specimens from Tanzania that are in need of a genetic diagnosis have to be sent to Kenya or South Africa.
Presentation by parents & DMD support group members.
Parents and patient support group members shared their thoughts on social and healthcare implications of DMD.
Ms. Huma Zainab from Islamabad, Pakistan, Ms. Pinky Maurya from Mumbai, Mrs. Manoranjitham from Karur and Ms. Arma Haldary from Kabul, Afghanistan participated. One of them shared about the hope they are looking for DMD, which should be affordable while many of them insisted that there should be a collaboration among all likeminded organizations and individuals to make a solution faster or at least a safe method to delay the progression of the disease. .
Mr. Takashi Onaka Memorial Oration
Dr Yoshitsugu Aoki,
Director Molecular Therapy, National Centre for Neurology & Psychiatry, Tokyo, Japan .,
In his presentation explained from the early stages of the disease how several treatment approaches have been taking shape till date to arrive at this point of time where four approved drugs are available for exon skipping method of treatment approach to DMD and said that their arrival has given a new hope to the patients which was not available few years ago. He also commented about their team’s multi exon skipping approach whose research is underway. Dr Jyothi Prabhu (Associate Professor and Head of Division of Molecular Medicine, St Johns Research Institute, St Johns National Academy of Health Sciences, India) who interacted with Dr. Aoki on molecular aspects of exon skipping therapies brought out the complex intricacies of the technical terminologies in an easily understandable manner to the attendees from a non-medical background.
Dr K. Raghavan,
Chief Consultant, Pediatric Neurology, JAICARE, Madurai, India.
.
Chief Consultant, Pediatric Neurology, JAICARE, Madurai, India. .
He presented the outcome of their clinical study and explained, how a safe and disease modifying approach with neu REIX beta glucans could help delay the progress of DMD until a definitely and affordable solution to correct the gene defect reaches everyone. He added that the finding of plasma dystrophin increase has been a breakthrough in their study which when confirmed by additional evaluation may even improve the outcome of the study and that a six months study in DMD along with a two months study in LGMD is underway beside a pre-clinical study jointly with Japanese collaborators. Dr. Nguyen Thanh Liem, Professor, College of Heath Sciences, a pioneer and innovator in pediatric endoscopic surgery and stem cell transplantation from Vin University, Vietnam lauded the outcome and was open for a discussion to support such studies in Vietnam.
Mr Yasushi Onaka,
President, Sophy Inc., Japan.
Mr Yasushi Onaka, President, Sophy Inc., Japan presented the vote of thanks. Rev. Fr. Dr. Danis Ponniah SJ, Provincial of Madurai Jesuit Province, India lauded the efforts of Dr Raghavan in taking care of the disabled children from all over India who visit the centre and appreciated the support by Fr Vargheesh Antony and Fr Francis Xavier (Rector, Loyola, Chennai). He appreciated the collaborative efforts with global organizations through their committed activities to Jaicare.
The event was covered in regional and national media
The Pharmatimes
The Economic Times
The Times of India
Dinamalar