The responsibilities of the Community Council include:

I am the founding President of EDYCS Epilepsy Group in the Republic of Mauritius.

Education

Project Management and Resource Mobilization

Current serving roles

• Executive Board EDYCS Epilepsy Group as President
• Vice Chairperson of the Africa Disability Alliance
• Vice Chair of the IBE African Region

Other initiatives

• Engaging the Ministry of Health and Wellness to the establishment of the IGAP Working Group and its domestication at country level.
• Member of the Epilepsy Africa Alliance.
• Founder of the EDYCS Help to Grow SEN Schools in both Mauritius and Rodrigues islands
• Spearhead for the establishment of the island premier Epilepsy Center located in Port Louis providing free epilepsy care and therapeutic services to patients with epilepsy.

I am a person with epilepsy and a member of the Kenya Association for the Welfare of People with Epilepsy (KAWE). Despite my epilepsy I am a very able market researcher and behaviour evaluation specialist who brings a wealth of knowledge to my leadership of the Amethyst Consulting business team. I am passionate about the power of research to solve business problems. In addition to my research expertise, I offer paid talent services as a reseller of talent assessment services, a foundational piano tutor and voice coach, voiceover artiste and book editor. I am a certified talent assessor, first level executive and business coach and an accredited Hogan practitioner.

Current serving roles

• Chairperson of the Mental Health Alliance of Kenya (2021)

Achievements

• Panelist at the launch of the African IBE African Advocacy Toolkit 2021
• Contributor to the ICHOM Epilepsy Set Dissemination (Int’l Consortium for Health Outcomes Management) 2022
• Advisory group member to the Anti Stigma Advocacy Toolkit
• Three media interviews on creating greater awareness about the state of the condition in the country

I am a mother and I take pride in my role as a caregiver to my daughter, Nina Mago, who is the founder of the Purple Bench Initiative, an organisation championing epilepsy awareness to reduce stigma and discrimination and ensure persons with epilepsy live dignified, meaningful and highly impactful life. I am the Program Director of Purple Bench Initiative. I am an international development leader who has worked with grassroots communities for more than 25 years. I have been involved in various activities to support the sustainability of rural women through “asset-based community development” approach. I am a linguist, speaking the majority of languages in Uganda. I also speak Russian, English, French and Kiswahili. I am an ardent advocate for the rights of persons living with epilepsy.

Education

• Msc. Extension for Natural Resource based Livelihoods, University of Reading, UK
• BA Mass Communication, Makerere University, Kampala Uganda.
• Diploma in French language, English/French Translator from institute of Translators and interpreters, Strasbourg France
• Rural Journalism – University of Lagos, Nigeria, Disability Rights in African Context, University of Pretoria

Current serving roles

• Program Director Purple Bench Initiative

I am a person with epilepsy and the International Bureau of Epilepsy Vice President- Africa with 28 affiliates in Africa.

Education

• MSc in Mental Health in Children and Young People – University of Edinburgh
• MBA in Leadership and Sustainability from UK
• BA in Development Studies from Ireland
• Postgraduate Diploma in Disability and Rehabilitation Management

Current serving roles

• Member of Pan African Network for Persons with Psychosocial Disabilities (PANPPD). Founding Chairperson of the National Epilepsy Association
• Psychoeducation Task Force of the Psychiatry Commission
• WHO Topic Expert Group (TEG) Member for the mental health gap (mhGAP) – Epilepsy
• Module and also International Consortium for Health Outcomes Measurement
• Epilepsy Standard Outcomes Working Group Member.
• At Kenya Medical Institute of Research – Advisor – Epilepsy Pathway Innovation in Africa Project
• Board Director for African Disability Alliance (ADA) contributing globally on issues of Mainstreaming and Inclusion of persons with disabilities
• UN Spotlight Initiative as a Civil Society National Reference Group member in Malawi

I’m a person with epilepsy since 2006. I am a banker and for the past eight years i work as a social worker at India Epilepsy Foundation as PRO and arranging activities at the rehabilitation center.

Awards

• AOEC regional Golden Light Award winner 2022

My son was born with hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day. The seizures included infantile spasms, a rare and complex epilepsy. Despite a cocktail of five anti-epileptic medications, he was having hundreds of seizures per day. He required a right hemispherotomy at seventeen months old to stop his seizures in Buenos Aires, Argentina. He is seizure free since and meds free. His journey inspired me to help other children like my son in Latin America and Spain, so I created Fundación de Hemisferectomía in 2018 with my husband. I regularly present at national advocacy and medical conferences about inclusion, epilepsy surgery, Cortical Visual disability, and rare diseases.

Current serving roles

• Argentine Federation of Rare Diseases (FADEPOF) Steering committee
• Iberoamerican Alliance for Rare Diseases (ALIBER) board of directors
• FundHemi representative as part of the University of the Patient and the Family (UPF)

I am 57 years old, I am a lawyer and I have four children. My 28-year-old daughter, Michela, has had refractory epilepsy and seizures every day since she was 6 years old. I have lived through the entire process of consulting many neurologists inside and outside the country, ketogenic diet, vagal stimulator, cannabis oil, etc. Also all the difficulties involved in being inserted in society both in the educational, labour field, etc. In 2019 she won the IBE Golden Lights Award representing Latin America.

Together with other professionals, we form the group of volunteers of the Chilean League of Epilepsy. I have presented on law and epilepsy at International Congresses (Mexico, Costa Rica). I participate in a group of lawyers who, together with OPS, have a project to investigate the legal situation of epilepsy in different countries, to suggest certain minimum legal standards that help the quality of life of people with epilepsy.

I am from Cali, Colombia originally, but I currently reside in Cartagena, married with two children. I am non-medical professional. I specialize in speech and language pathology for children and adolescents and hold a master’s degree in speech therapy and neuropsychology. I currently work in a neurological hospital and with the secretary of education of Cartagena.

Current serving roles

• IBE Latin America Secretary
• Member of the expert committee on epilepsy in Colombia
• Executive Committee member of Colombian League Against Epilepsy
• Leader epilepsy education program of the IBE for Latin America

Achievements and Awards

• 1414 Epilepsy Law of November 11th, 2010, for the protection of people with epilepsy
• Prevention and promotion meetings with people with epilepsy, families and general community and auto self-help epilepsy groups
• Leader in material and educational programs on epilepsy for Colombia and LA
• Participation in epilepsy surgery programs (pre to post-surgical rehabilitation)
• Local, Regional, and National Congresses committees in epilepsy, stigma and discrimination reduction aimed at medical and non-medical personnel, people with epilepsy, families and the community, teachers, nurses, religious, etc.
• Colombian National Academic winner in Epilepsy – rehabilitation and social aspects

I am the Community Operations Manager at the National Epilepsy Foundation of America. After graduating from Vanderbilt University in Nashville, Tennessee in 2001, I moved to Seattle, Washington where I was an elementary and special education teacher for 10 years. Having lived with epilepsy since the age of 19, I began volunteering with the Epilepsy Foundation. After successful brain surgery to control seizures in 2012, I joined the staff of the Epilepsy Foundation as Volunteer Coordinator. My job description expanded, and I became Program & Outreach Manager in 2014. My role changed once again in 2018 when I took on Communications and Marketing responsibilities. In 2021, I became Operations Manager of the West Region and currently support programs, events, Seizure First Aid training, social media, and advocacy for 12 states in the western part of the United States.

Current serving roles

• Community Operations Manager National Epilepsy Foundation of America

Born in White Rock, BC, I’m a single mother of a fabulous 29-year-old son. I wasn’t diagnosed with epilepsy until 2015 at the age of 49, and then, with psychogenic non-epileptic seizures in 2019. I couldn’t get the help I required in BC and was forced to travel to Alberta for care, eventually moving to Calgary in 2019. My case is complex. I’ve had 3 temporal lobe resections, undergone all the tests available, plus therapy, and yet, I still have seizures.

My focus is to help others through their journey by sharing my experiences and by listening to theirs. I’m actively involved in the epilepsy community here in Calgary. Weekly visits to the seizure monitoring unit, co-facilitating the Project UPLIFT sessions, a combination of cognitive behaviour therapy and mindfulness skills to better manage depression and anxiety in people with epilepsy, and finally, my participation in focus groups and research projects here and abroad allows me to help others.

Publications

• My memoir, Battles of The Mind, published in January 2023 on Amazon, was written for 3 reasons; education, awareness, and to let individuals like me, know that they’re not alone.

My professional background is in finance and data science. I had my first seizures as an adult during a bout with bacterial meningitis that left me in intensive care. My introduction to the epilepsy community came shortly thereafter as a beneficiary of Epilepsy Toronto’s support services, where I remain involved as a volunteer. I have experience raising awareness through public speaking, facilitating group sessions, and advocating on community councils. 

I was diagnosed with epilepsy at age 21 and now it is in control. I like traveling, hanging around, listening to music, and enjoying food with family and friends.

In the past years, I have been engaging in Hong Kong Epilepsy Association, a patient self-help group focusing on supporting epileptic friends and their carers. We volunteer to organise activities to enhance bonding between members, and raise public awareness through different outreach campaigns.

I have been actively involved in counseling and social work practice for more than 25 years, and have worked with diverse groups such as juvenile delinquents, intellectually-challenged adults, and people with dementia and epilepsy. I am the executive director, epilepsy counsellor and honorary secretary of the Epilepsy Care Group (Singapore). I was instrumental in setting up Singapore’s first local epilepsy support, Epilepsy Care Group (Singapore), and lobbying for the needs of persons with epilepsy from a societal level to a national level. I have conducted training workshops on topics including depression, epilepsy, behaviour modification, self-care. For leisure, I work out at the gym, train with my dragon boat team, travel, read, and tend to my plants.

Current serving roles

• Regional sub-editor (Western Pacific) for the International Epilepsy News of IBE, 2001 to 2010
• Member of the Organising Committee for the 27th International Epilepsy Congress Lay Symposium, Singapore 2007
• Member of the International Bureau for Epilepsy Legislation Task Force

I am a rare disease advocate and health professional with a background in nursing. After a 14-year odyssey, my family received the diagnosis for our son, Will, who has SCN2A. In 2020, I was appointed as the Consumer Engagement and Advocacy Manager for Child Unlimited, an Australian network of researchers, clinicians and advocates. I consult with hospital boards, and industry and community groups, ensuring quality consumer engagement across the health and disability sectors. I am co-founder Genetic Epilepsy Team Australia and founder SCN2A Australia. I am passionate about empowering consumers to have a voice in their care and outcomes.

Education

• Masters Degrees in Health Science and Wellness

Current serving roles

• Rare Epilepsy Lead, Epilepsy Foundation

I reside in Rome, the city of my birth, and have lived here for 60 years. I have two grown-up children – a girl and a boy. I have had various professional experiences, including working in a publishing house and in the public relations and marketing departments of pharmaceutical companies. I have owned and operated two medical communication agencies and now work independently as a consultant. Additionally, I am a practicing journalist.

Current serving roles

• Member of the board of the Associazione Italiana Epilessia (AIE) – Italian Epilepsy Association
• AIE spokesperson, with responsibility for communication strategy
• Member of SIMeN – the Italian Society of Narrative Medicine
• Member of the board of APAMARR – National Association of People Living with Rheumatic and Rare Diseases

Achievements

• EUPATI Fellow

I am an internationally recognized social activist and psychologist from Bosnia and Herzegovina who ignited hope in a generation of youth who lost homes, families, and dreams during the Siege of Sarajevo. As parents of epileptic children, we face challenges in school, our community, with peers, and obstacles daily. In my case, they denied my child the right to attend school because of epilepsy, so we went through a legal fight to allow children affected by epilepsy and other children with disabilities to attend the regular schooling system. As a result, I founded the Center against Epilepsy, an NGO that educates family, friends, and community members about epilepsy and raises epilepsy awareness among the public, people living with epilepsy, and their families.

Education

• Master of Science in Economics and a Bachelor of Science in Psychology

Achievements

• Nominated for the Reebok Human Rights Award for my outstanding contribution to protecting children in besieged Sarajevo
• Fellowship recipient for a graduate exchange program in Non-profit Management and Public Policy
• Presented research at the 34th International Congress of Epilepsy

From Pula (Istria, Croatia), I am the mother of two beautiful boys. I am a gynecological nurse with many years of experience. People tell me that I am very empathetic, humane and dedicated to my work, and in my life as well. I am sociable and communicative, I really like to help others because it fills my heart.

I am a proud member of the Croatian Epilepsy Association and I am happy that I have the opportunity to promote health and knowledge about epilepsy so that it does not happen again was a taboo topic in society. My goal, my desire, my vision, and finally my mission is to make the voice about epilepsy so loud and strong that we prove to patients and their families, as well as the rest of the population, and to teach them that epilepsy is not a taboo subject, but that it is important to talk about. Today, I am advocating that life with epilepsy be made easier for patients, that there is less stigma in society, that various associations connect with each other, and that international foundations strengthen communication by disseminating information about epilepsy in various ways, some via the Internet, some at various events, gatherings, workshops, conferences and congresses.

Education

• Master of Science in Economics and a Bachelor of Science in Psychology

Achievements

• A participant of the EUPATI platforms – Cohorts 6

I began my contribution to epilepsy in 2018, with the constitution together with two other families of the Spanish CSWS Association, over which I presided. One of my sons was diagnosed with epileptic encephalopathy 15 months after suffering encephalitis still of unknown origin. The diagnostic delay, the loneliness, the lack of information, and the firm intention to renounce conformism and resignation were the seeds that bloom today; pursuing a dream and being convinced that any situation must be faced as an opportunity.

Education

• I am a criminologist and continue to train tirelessly to contribute to this multidisciplinary vision. My own grain of sand to the research of this pathology from a social perspective.

Current serving roles

• President of the Spanish Epilepsy Federation (FEDE) since 2021