About us
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We are the global network of people with Down syndrome and their families.
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 strategy
Our strategy makes sure we can do our work, knowing that it will contribute to a big goal we have set for ourselves.
Our network
Our network includes over 150 organisations that represent and support the Down syndrome community in their country.
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.
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.”
Staff team.
Our staff team coordinates the network.
They facilitate network meetings and lead research, programme activities, and international advocacy campaigns.
Board of Trustees.
The staff team is goverened by a Board of Trustees.
The Board is diverse, including people from all over the world, with a wide, combined breadth of professional and lived experience.
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 share our reports and policies here: