NEWS

I am running for the ASIA Awards competition on behalf of my organization, EDYCS Epilepsy Group which is the leading non-governmental organization in epilepsy neurological disorder established in December 1997 under the Registrar of Associations Act bearing registration 5268 in the Republic of Mauritius.

Professionally, I possess Postgraduate qualifications in Project Management among other trainings that I have attended over the years. I am married and currently have two daughters and one son.  The ASIA Awards will constitute a platform to creating visibility of epilepsy and EDYCS Epilepsy Group NGO. As the founder of EDYCS Epilepsy Group, my prime goal is to promote better quality of lives of people with epilepsy, fight discriminations and stigmas associated to the disorder and advocate for the recognition of the Rights of persons with epilepsy in compliance with the UN Convention on the Rights of Persons with Disabilities which Mauritius has ratified.

Epilepsy affects people of all ages, genders, races and income levels.  People with epilepsy and their families suffer from stigmatization and discrimination due to ignorance, misconceptions and negative attitudes surrounding the disease. They often face serious difficulties in education, employment, marriage and reproduction.  The risk of premature death in people with epilepsy is three times higher than the general population. Important causes of death and injury include sudden unexpected deaths in epilepsy, status epilepticus, burns, drowning and suicide. Epilepsy often coexists with and can be compounded by other comorbid health conditions, including other neurological disorders, necessitating a synergistic approach to addressing coexisting conditions.

I care about people with epilepsy and social work values benefit society and I believe altogether we can make a significant impact on people with epilepsy lives. My diverse work experience makes me a strong key partner in putting epilepsy on the public health agenda.

I bring continuity and managerial expertise that is required to steer the Continental work in the right direction in making epilepsy a health priority in the African region as Vice Chairperson of the International Bureau for Epilepsy African region. My lived experience provides me a solid base for my leadership confidence that I have built over the years. I have served on the IBE African Regional Committee as Chair and Vice-Chair for the past decade which has grounded me well to  to lead. During these years, I was supported by the IBE African Regional Committee members and current/past IBE Executive Vice Presidents Africa. This has given me the experience required to continue with the work that has been done in Africa as a model continent with regards to epilepsy and neurological advocacy. I have had experience of high-level policy dialogue engagement as we advocated for the ratification of IGAP in Africa. We set up a formidable team in the region and I was responsible of engaging with the Francophone speaking duty bearers which saw most them supporting the IGAP at WHO General Assembly in May 2022. I was also the contact person for IBE Africa when we worked with AU in drafting the African Union African Disability Protocol in which epilepsy is fully recognized.

My major focus during the past years was to strengthen epilepsy actions across the African continent and Mauritius including its 10^th district Rodrigues Island. I had the privilege to collaborate in the organisation of past epilepsy congresses held in Africa including the last one in Dakar, Senegal.

I was elected as Vice Chairperson in November 2015 to serve on the Africa Disability Alliance Board of Directors formerly known as the Secretariat of the African Decade of Persons with Disabilities. Africa Disability Alliance is a technical cross disability agency that has created a credible niche in the disability programming and policy implementation processes by working with the African Union, Governments, Civil Society, continental/regional and National Disabled People’s Organisations in Africa. My immediate priority was to include epilepsy in all current programmes and planned of actions.

In July 2023, I was appointed as new Chairperson of the Africa Disability Alliance, Since 2018, I have been advocating for the adoption and domestication of the Protocol on the Rights of Persons with Disabilities under the Alliance for Right – Africa towards Disability Inclusion (ARADI) continental project supported by EU/CBM. IBE Africa was among the prime organisations to receive funding The ARADI programme is aimed at enabling CSOs and Pan African Disability Federations to participate and contribute to the majority of key-AU continental decisions, policies and laws related to human rights and disability – for both women and men.

I am currently spearheading the Trendsetter ‘Making Epilepsy a Health Priority in Africa’ project under the financing of IBE Africa/Band Foundation. My prime objective is to lobby and encourage the Government of the Republic of Mauritius & other SADC governments to align its National health Policies with WHO approved resolution on the Intersectoral Global Action on Epilepsy and Other Neurological Disorders. Furthermore, volunteering with different Chapters as Vice Chair of IBE Africa Region has given me an opportunity to network with many leaders in pushing forward the epilepsy agenda. Key to the needs that I will work on is ensuring that we have sufficient funding for the chapter, increase the female advocates capacity building and spearhead the monitoring of IGAP implementation.

I bring vast experience as the Founding President of EDYCS Epilepsy Group Mauritius, member of the IBE, where I have learned communication and collaboration skills that has

helped address the issues of the epilepsy community in Mauritius and Rodrigues islands.

Being open to different perspectives has clearly shown tremendous growth in my relationships with others while succeeding in developing close collaboration with major stakeholders in the Republic of Mauritius, among others the Ministry of Health & Wellness, the Ministry of Education, the Ministry of Social Integration, the National Social Inclusion Foundation, the Embassies, the Corporate Foundations and WHO Country Office.

Under my present leadership at EDYCS Epilepsy Group, I have spearheaded the establishment of the islands first ‘Epilepsy Centers’ also referred as ‘EDYCS Epilepsy Center’ in Mauritius and Rodrigues islands operating under the aegis of EDYCS Epilepsy Group providing free epilepsy care services and therapeutic support to more than 2000 patients with epilepsy of all ages and background coming from all over the island of Mauritius.

I work relentlessly securing funding from both the Government and private foundations to establish Special Education Needs Schools known as ‘EDYCS Help to Grow’ promoting an inclusive education in children and adolescents with epilepsy and learning disorders in Mauritius and Rodrigues. Today both schools have a total of 50 pupils receiving free education and monitored by trained qualified educators in epilepsy.

Our works in supporting the epilepsy community in the Republic of Mauritius was such that it was the recipient of several awards among others the Africa Leadership Award in Healthcare in 2019, Outstanding NGO Awards attributed by the Mauritius Council of Social Services and the President EDYCS Epilepsy Group receiving the official insignia of Commander of the Star Key of the Indian Ocean marking the National Republic Day conferred by the President of the Republic of Mauritius.