About us
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We are the global network of people with Down syndrome and their families.
Our network includes over 150 organisations that represent and support the Down syndrome community in their country.
Our network includes people with Down syndrome and other disabilities, friends and family members, professionals and organisations from around the world.
The people in our network tell us about life for people with Down syndrome in different parts of the world.
We gather evidence and examples of good practice to understand what needs to change.
Then, together we speak up for the human rights of all people with Down syndrome around the world.
We have a stronger voice when we work together.
Our story.
Our story begins in 1981.
Sylvia Escamilla, the founder and president of Fundación John Langdon Down, organised the first World Down Syndrome Congress in Mexico City.
The Congress was a groundbreaking event.
People with Down syndrome, their families and supporters, came together to share their stories, learn from each other, and make plans to help everyone join in and be part of society.
The success of the Congress inspired the organisers, Jo Mills (Canada), Penny Robertson (Australia), and Sylvia Escamilla (Mexico), to form an international network of organisations working to improve the lives of people with Down syndrome.
Down Syndrome International was founded in 1993, with a mission to make the world more inclusive for people with Down syndrome.
In October 2023, on our 30th anniversary, we launched a new strategy to guide our work into the future.
Today, Down Syndrome International is a network of thousands of people with Down syndrome, along with their families and supporters, and more than 150 organisations, from every part of the globe.
Together we speak up for the human rights of people with Down syndrome worldwide.
We share a vision of a better world where all people with Down syndrome are fully included in society.
Our strategy
A strategy is a plan of how we will make the world better.
It is important to guide the work that we do.
It helps everyone to agree on why the organisation exists and what it plans to do.
It includes:
- A vision of how we want the world to be in the future.
- The approaches we will use to make change happen.
- The foundations of our work.
- The principles that will guide our work.
Our network
Our strategy will make sure we can do our work, knowing that it will contribute to a big goal we have set for ourselves.
View and download our strategy as a PDF here:
View our strategy on our website here:
Watch a video version of our strategy below:
Our network
People with Down syndrome and their families have a stronger voice when they work together as Down syndrome organisations.
The Down Syndrome International Network has more than 150 organisation members working in 113 countries.
Click on the icons in the map below to see information about an organisation.
- This icon represents a Representative organisation. These are usually national Down syndrome organisations that represent their country at DSi
- This icon represents an Affiliate organisation. These are other Down syndrome or disability advocacy groups, or organisations that focus on specific issues like healthcare, education, or employment
What network members do:
Supporting people with Down syndrome.
Organisation members can give the best support to people and families. They understand the systems and what help is available.
Representing their country.
Organisation members watch and listen to what happens in their country. They tell the network about life for people with Down syndrome. This helps the network know where to help the most.
By sharing this information, the network can make better plans. They can help people with Down syndrome in the best way.
Speaking up.
Organisations in each country can make the most change.
We all work together to plan and run campaigns that can be shared worldwide.
This teamwork helps make a big difference everywhere.
Projects.
Our Programme team helps organisations with special projects. For example, they help start self-advocacy groups.
Self-advocacy groups help people speak up for themselves and make their own choices. The organisation supports them to do this.
"The network has supported us in our successful advocacy and activism for a more inclusive society."
"The network has helped us connect with like-minded partners that we work with to share best practices so we can support our community."
"The network keeps us up to date with good practices and new information in the different fields relevant to Down syndrome."
Become a network member
If you are part of an organisation that wants to join the Down Syndrome International Network, click below to learn more
Our Ambassadors.
People with Down syndrome are often not included in the organisations that represent them.
This means that organisations do not always know what the people they represent think or want.
At Down Syndrome International we know it is important to include people with Down syndrome at all levels of the organisation.
We work with a committee made up of people with Down syndrome who are nominated by the network member organisation in their country. They are called Ambassadors.
"My dream is for the world to become a place where the general population’s respect encourages and enables citizens to contribute to life, develop to their full potential, and feel like they have a purpose in life."
"We do research by interviewing people from our country and we create resources, like webinars, booklets and videos, like how to include people in meetings."
"We listen and respect and support each other. We share lots of cool ideas and get new ideas to share in our country."
The Ambassador group helps us understand how to include people with Down syndrome better. They work on lots of projects with our staff team. They help us create information and resources and give feedback on work we have done.
We now have Ambassadors working on our high-level strategic teams, including with our Board of Trustees. They take back what they learn to their member organsiations.
The group mentor and support each other in their self-advocacy skills.
This makes self-advocacy stronger around the world.
"I speak up on behalf of people with Down syndrome in my country to make sure other voices are being heard."
"The reason I am an Ambassador is because I like to change people's perspectives about people with Down syndrome and educate society."
Introducing our Ambassador team:
Eoin Gibson, Ambassador for Australia
Eoin is an Ambassador with Down Syndrome Australia.
“My name is Eoin Gibson, my first name is pronounced Owen. My parents are originally from Ireland, but I was born in Australia.
I have lived and worked in Dubai at Zayed University as a waiter in the university canteen. I now work in a supermarket here in Brisbane Australia as a helper in fruit and vegetables and also the bakery.”
Samuel de Carvalho Sestaro, Ambassador for Brazil
Samuel is an Ambassador with Federacao Brasileira das Associacoes Sindrome de Down.
I am married, and live in Brazil, in Santos, in the state of SP. I have a degree in Fashion Design and a Technical Course in Business Administration. I am a Self-Defender, Speaker, Actor, Model, Master of Ceremonies, and I work as a Parliamentary Advisor.
I am very happy to be part of the DSi Ambassadors Committee. Being a DSi Ambassador is a great honour and an opportunity to work towards a more just society, with the inclusion of all people with Down syndrome.
Janet Charchuk, Ambassador for Canada
Janet is an Ambassador with the Canadian Down Syndrome Society.
Janet is one of the founding members and past chair of Voices at the Table for Advocacy, with the Canadian Down Syndrome Society.
“With Special Olympics I won Gold for Canada in the World Games in 2017 in the sport of snowshoeing. I am also an athlete leader, spokesperson, mentor, and health messenger.
I enjoy sports, being involved in my community, being with my friends, cooking, yoga, and showing my abilities while speaking up for those who cannot speak up for themselves.”
I am very happy to be part of the DSi Ambassadors Committee.
Ying Yue, Ambassador for China
Ying Yue was born in June 2006. He is the Ambassador with Up For Down’s China.
He loves martial arts movies. He taught himself two kung fu styles: snake fist and drunken fist. He also loves traditional Chinese culture. He enjoys drawing lucky charms to bring good luck to people. He is kind and forgiving. Right now, he is exercising to get healthier and feel more confident.
He is honest, friendly, and a strong-minded Ambassador.
Sam Potterton, Ambassador for England, Wales and Northern Ireland
Hi I am Sam. I am from the United Kingdom and live in Bristol.
I work with the Down’s Syndrome Association.
I like playing football and I am a massive Manchester United fan.
I like telling jokes and making people laugh!
I am proud to represent my country, help the group and talk about important things.
I am looking forward to contributing as an Ambassador and I cannot wait to get started.
Petra Angelina, Ambassador for Indonesia
I love writing poems and I speak up for people with Down syndrome. I live with Down syndrome myself, and I just want everyone to accept us, just as we are, without treating us any differently from anyone else.
Back in 2019, I published my first poetry book called Suara Hati (Voice of My Heart). I also help promote inclusion through YAPESDI, the Indonesian Down Syndrome Care Foundation.
I have joined international seminars hosted by UN Women, I was invited to speak at the 14th International Disability Law Summer School Congress at the University of Galway in Ireland and also at the First Congress on Political Rights of Women and Girls with Disabilities in Bangkok, Thailand. I have presented at a Disability Rights Workshop in Kathmandu, Nepal.
Charlotte Muthoni Hirst, Ambassador for Kenya
Muthoni is a self-advocate with Down Syndrome Society of Kenya.
“My vision is to ensure all individuals with Down syndrome are assured of their human rights and valued by a more inclusive society.
I love Edward “Eddie” Barbanell’s (American Comedian and Actor with Down syndrome) quote: “Having Down syndrome means nothing to me. I am special like everyone else. I do not let people judge me for having Down syndrome. The important thing is how I feel about myself. On the inside. I feel beautiful.””
Carlos Ramirez, Ambassador for Mexico
Carlos is a self-advocate with Fundacion John Langdon Down.
He is an experimental artist at the Mexican School of Down Art of the John Langdon Down Foundation in Mexico City.
Andrew Oswin, Ambassador for New Zealand
Andrew is an Ambassador and mentor with the New Zealand Down Syndrome Association.
“I enjoy being a self-advocate because I know how important it is and what it means to me to represent my country.”
Tasha Oosthuizen, Ambassador for South Africa
Tasha is an Ambassador with Down Syndrome South Africa.
I am from East London, South Africa.
I went to mainstream school till 14 years old. Then a special class till 17.
I speak Afrikaans at home but I am bilingual.
I am the eldest of 3, I have a brother and sister.
Pearl Lüthy, Ambassador for Switzerland
Pearl is a self-advocate with Insieme21.
“I like being a self-advocate because I like to speak up for people with Down syndrome.
I believe that we need to be in our local schools, working in good jobs and living where we want with who we want.”
Halis Güney, Ambassador for Turkey
Halis is a self-advocate with Turkiye Down Sendromu Dernegi.
“I work as a restaurant server at Hilton Istanbul Bosphorus.”
Andrew Davies, Ambassador for Scotland
Andrew is an Ambassador with Down’s Syndrome Scotland.
My favourite hobbies are going out for walks, drama and singing and looking after my nephews who are cute.
I’m happy, active and passionate and I like to share my wisdom all the round.
I also enjoy working at Perth Museum cafe on a Friday and socialising with my friends.
Charlotte Woodward, Ambassador for the United States
Charlotte works at the National Down Syndrome Society as the Education Program Associate.
“I love my career at NDSS. It is a very stimulating and fulfilling experience, and I am given the opportunity to show responsibility and to take initiative.
As the Education Program Associate, not only do I give presentations and speak at various conferences and events, I am also involved in education policy, I develop resources, and I do many other important advocacy activities.”
Board of Trustees.
Down Syndrome International is governed by a Board of Trustees.
Trustees give their time voluntarily and oversee the strategic direction and legal obligations of the charity.
All of our current trustees are people with Down syndrome or family members.
The board is diverse, including people from all over the world, with a wide, combined breadth of professional and lived experience.
Meet our trustees:
Bridget Snedden, President
Bridget Snedden ONZM has over 30 years’ experience in the disability sector, with governance roles across national and international organisations.
Her governance work is grounded in a strong commitment to the human rights, autonomy, and full participation of disabled people.
Bridget has an adult son with Down syndrome and brings both governance expertise and lived experience to her work.
She advocates for accountable leadership and decisions that enable disabled people and their families to live full lives as equal members of their communities.
Rhonda Faragher, Vice President
Dr Rhonda Faragher AO is Director of the Down Syndrome Research Program and Professor of Diversity and Inclusion in the School of Education, The University of Queensland, Australia.
In 2023, Rhonda was appointed an Officer of the Order of Australia (AO) for her distinguished service to people with Down syndrome through research programs and education initiatives. She has an adult daughter with Down syndrome.
Angus Graham, Treasurer
Angus’ career has been in banking, finance and funds management.
Angus is a past Chair of Down Syndrome Australia and is member of member of Australia’s National Disability Insurance Scheme (NDIS) Advisory Board on Intellectual Disability.
He is also a Council Member of the National Centre of Excellence in Intellectual Disability Health and sits in the International Disability Alliance (IDA) Finance & Risk Committee.
Angus is a past Director & Trustee of the Lord Mayors Charitable Foundation.
In 2014, Angus received an Order of Australia for service to the Community and the Banking & Finance Sector.
Ana Lucia Arellano
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.
Ana Lucia is a former Chair of the International Disability Alliance and former President of the Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families.
Carol Boys
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 Down’s Syndrome Association, with a strong team of dedicated staff.
Janet Charchuk
Janet is one of the founding members and past chair of Voices at the Table for Advocacy, with the Canadian Down Syndrome Society.
“With Special Olympics I won Gold for Canada in the World Games in 2017 in the sport of snowshoeing. I am also an athlete leader, spokesperson, mentor, and health messenger.
I enjoy sports, being involved in my community, being with my friends, cooking, yoga, and showing my abilities while speaking up for those who cannot speak up for themselves.”
Vanessa Dos Santos
Vanessa Dos Santos is the mother of 3 boys of which the youngest has both Down syndrome and Cerebral Palsy.
Vanessa is former 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.
Jessamy Tang
Jessamy Tang was a sports media executive before becoming a passionate advocate when her son was born with Down syndrome.
She chairs the World Down Syndrome Day Conference at the United Nations in New York.
She also currently serves on the board of Disability Rights Legal Center and The Matthew Foundation.
Staff team.
Our staff team coordinates the network.
They facilitate network meetings and lead research, programme activities, and international advocacy campaigns.
The staff team is governed by a Board of Trustees and guided by our Ambassadors.
Meet our staff team:
Emma Bishop, Inclusion and Advocacy Officer
Hi, I am Emma. I have Down syndrome.
I started working with Down Syndrome International in 2023. I am an Inclusion and Advocacy Officer.
I want to help people with learning disabilities and Down syndrome around the world.
I help to make sure our work is inclusive.
Andrew Boys, Executive Director
Andrew has been the Executive Director of Down Syndrome International since our launch in 2009.
Andrew works with our Board of Trustees to build our global membership network.
Andrew’s brother Alex has Down syndrome.
Kate Burhouse, Data and Systems Coordinator
Hi, I’m Kate. I joined the team in 2020.
I am responsible for maintaining and improving our data management systems and processes, ensuring compliance and working with our operational team.
Robin Gibson, Inclusion and Self-Advocacy Lead
Hi, I’m Robin. I joined the team in May 2020.
My role focuses on including people with Down syndrome in our work and helping other organisations do the same.
I have enjoyed working with people with Down syndrome for over 10 years. Before working with Down Syndrome International, I managed supported living services in the UK.
Ruth Jones, Finance Officer
Hi, I’m Ruth.
I joined the team in December 2020.
I work on our day-to-day transaction activities while also trying to help improve our financial efficiency.
Having previously worked in a profit-driven environment, I am enjoying working in a collaborative environment that positively impacts the lives of individuals with Down syndrome.
Tia Nelis, Trainer and Consultant
Hello, I am Tia.
I am working with Down Syndrome International on a secondment through Inclusion International. I am helping Joe and Catherine from The Down’s Syndrome Association to understand Listen Include Respect.
Before this, I worked with Inclusion International on the Listen Include Respect Guidelines.
Nathan Rowe, Programme Director
Hi, I’m Nathan. I’ve been working with Down Syndrome International since January 2017.
As Programme Director I run our programme work, which includes leading on programme strategy and making the organisation more inclusive.
I had a sister with an intellectual disability, Issy, who passed away in 2021. I am passionate about pushing for people like Issy to be included in their communities around the world.
Anna Sands, Communications Team Lead
Hi, I’m Anna. I joined the team in 2018.
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.
I also share information about the work we are doing and how you can get involved.
I have a son who has Down syndrome. I want all people with Down syndrome, and their families, to have the support they need to live the lives that they choose.
Russell Watkins, Fundraising Lead
Hi, I’m Russell. I joined the team in 2021.
I am responsible for our development projects and fundraising activities.
Before I joined the team, I volunteered with Down Syndrome International supporting the transition to a new Customer Relationship Management system and after that with our fundraising strategy.
I have a daughter with Down syndrome.
Our memberships.
We are a member of the following international groups:
International Disability Alliance.
The International Disability Alliance is an Alliance of global and regional organisations of persons with disabilities.
Together, we advocate at the United Nations for a more inclusive global environment for everyone.
We are in Special Consultative Status with the UN Department of Economic and Social Affairs.
Partnership for Maternal Newborn and Child Health.
Partnership for Maternal Newborn and Child Health is hosted by the World Health Organization.
It is the world’s largest alliance for women’s, children’s and adolescents’ health and well-being, with over 1,400 partner organisations working together to build a more equitable world.
Global Alliance for Care.
The Global Alliance for Care is the first global multi-stakeholder community that facilitates and fosters spaces for collective action, advocacy, communication, and learning about care, its recognition as a need, as work, and as a right.
National Institutes of Health Down Syndrome Consortium.
The National Institutes of Health Down Syndrome Consortium encourages research on the health of people with Down syndrome.
Together we make sure that accurate and up-to-date information reaches the people who need it.
Patrons.
We are very grateful to our patrons, who give us their time, support our events, raise our public profile and make a major contribution to help us achieve our objectives.
Damon and Georgie Hill
Damon Hill OBE was the 1996 Formula One World Champion and is a successful business, television and media personality.
Georgie Hill is a Trustee of Down’s Syndrome Association (UK).
Their son Oliver has Down syndrome.
Michael Caines
Michael Caines MBE is an internationally recognised chef, business and television personality.
Michael is the visionary behind Lympstone Manor, a luxury boutique hotel and restaurant in Exeter, UK.
He has a Michelin star at Lympstone Manor and previously held 2 stars for 18 years consecutively at Gidleigh park.
Policies and performance.
We promise to be as transparent as possible about our work.
We explain our activities and spending each year.
Our annual reports can be found on the Charity Commission for England and Wales website. Click on the button and then click “Accounts and annual returns”.
We aim to protect vulnerable individuals from harm.
Our safeguarding policy ensures that our work does not cause harm.
We aim to provide a safe and effective working environment.
Our whistleblowing policy ensures that staff can raise concerns about our work.
We promise to keep your personal data safe.
Our privacy policy ensures that your personal data is safe with us.
We welcome your feedback.
We need to make sure that the people we work with are safe.
We have a clear way to tell us about good or bad things.
Your feedback will help us get better.