DOWN SYNDROME - Key Persons
Ana Lucía Arellano Barba, from Ecuador, has been a human rights activist and advocate for the rights of persons with disabilities for 23 years, inspired by her son José Miguel, a self-advocate with Down syndrome. Currently, Ana Lucia is Chair of the International Disability Alliance and President of the Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families (RIADIS).
Hi, I'm Anna. I joined DSi in February 2018. I am the Supporter Engagement Manager.
I am the person that you will talk to first if you reach out to us. I help people to find the information or support they are looking for.
Bridget Snedden is the parent of a young man with Down syndrome and President of DSi. Her work over the past 25 years has focused on what is needed to ensure a fully inclusive life for people with disabilities. She has held a range of governance and management roles and is currently a director of Family Network NZ.
Carol Boys is Chief Executive of Down's Syndrome Association (England, Wales and Northern Ireland) and the mother of Alex, a young man with Down syndrome. Carol has been the driving force behind the successful growth of the DSA, with a strong team of dedicated staff.
Darren Warkcup is treasurer and a trustee of the Down's Syndrome Association (England, Wales and Northern Ireland). Full bio to follow shortly.
Job Titles:
- Vice - President
- Director of the Down Syndrome Research Program
Dr Rhonda Faragher is Director of the Down Syndrome Research Program and Associate Professor in the School of Education, The University of Queensland, Australia.
Hi, I am Emma Bishop. I am 43 years old. I have Down syndrome.
I started working with DSi in 2023. I am a Programme Officer.
Janet Charchuk is the DSi Ambassador for Canada and the first person with Down syndrome on the board.
"I am a motivational speaker, self advocate, active community member and volunteer.
Jessamy Tang was a sports media executive before becoming a passionate advocate when her son was born with Down syndrome. She chairs the WDSD Conference at UN HQ in New York. She also currently serves on the board of Disability Rights Legal Center and The Matthew Foundation.
Hi, I'm Kate. I joined the team in 2020 as Operations and Data Officer.
I am responsible for maintaining and improving our data management systems and processes, ensuring compliance and working with our operational team.
Job Titles:
- Treasurer
- Chief Executive Officer of Down Syndrome Ireland
Patrick Clarke is retired as Chief Executive Officer of Down Syndrome Ireland. He is currently Treasurer of DSi, President of European Down Syndrome Association and Vice President of European Disability Forum, representing people with Down syndrome and intellectual disabilities.
Penny Robertson OAM is one of the founders of DSi and also the founder of the Australian International Schools in Indonesia where inclusive education has been successfully implemented since 1996.
Hi, I'm Russell. I joined the team in March 2021 as the Fundraising Officer.
I am responsible for our development projects and fundraising activities.
Before I joined the team, I volunteered with DSi supporting the transition to a new Customer Relationship Management system and after that with our fundraising strategy.
I have a daughter with Down syndrome.
Hello, I am Tia. Through Inclusion International, I am working with Down Syndrome International on a secondment, as a trainer and consultant, helping Joe and Catherine from The Down's Syndrome Association to understand Listen Include Respect.
I work for several other organisations that work alongside people with disabilities.
Vanessa Dos Santos is the mother of 3 boys of which the youngest has both Down syndrome and Cerebral Palsy. Vanessa is Co-Vice Chair of the International Disability Alliance. She has been working in the disability field since 1996, focusing on intellectual disability in poverty-stricken areas in Africa.