1981-1993 Expand In 1981, a vision for a more inclusive world for people with Down syndrome was ignited in Mexico City. Sylvia Escamilla, the founder and president of Fundación John Langdon Down, organized the first World Down Syndrome Congress, bringing together representatives from more than 25 countries. The Congress was a groundbreaking event, providing a platform for people with Down syndrome, their families, and advocates to share their stories, learn from each other, and develop strategies for promoting inclusion and full participation in society. Speakers at the Congress included Dr. Pueshel, Professor Jérôme Lejeune, and Dr. Smith, leading experts on Down syndrome at the time. Their insights and perspectives helped to shape the understanding of Down syndrome and inform the work of advocates around the world. The success of the first World Down Syndrome Congress inspired the organizers to establish an international network to support organizations working to improve the lives of people with Down syndrome. Jo Mills (Canada), Penny Robertson (Australia), and Sylvia Escamilla (Mexico) began work on forming the constitution of this new organization, later joined by representatives from Europe and Asia. In 1993, Down Syndrome International (DSi) was founded, marking a new era of global collaboration and advocacy for people with Down syndrome. A Legacy of Inspiration The first World Down Syndrome Congress was a watershed moment in the history of the Down syndrome community. It was a gathering of minds and hearts, united in a common goal: to create a better world for people with Down syndrome. The vision ignited at that first Congress has continued to burn brightly over the years. Thanks to the tireless efforts of advocates around the world, people with Down syndrome are now living more fulfilling and inclusive lives than ever before. But the work is not done. DSi and its partners continue to fight for the rights and inclusion of people with Down syndrome in all aspects of society. Together, we can create a world where everyone belongs.
2002 Expand In May 2002, DSi became a UK charity, officially recognized by the Charity Commission of England and Wales. As a UK charity, DSi was able to tap into the resources and generosity of the British people to support its work in the UK and beyond.
2006 Expand On December 13, 2006, history was made. At the United Nations Headquarters in New York, the Convention on the Rights of Persons with Disabilities (CRPD) was adopted. This landmark treaty recognizes and protects the human rights of people with disabilities, and it has had a profound impact on the lives of millions of people around the world. Down Syndrome International (DSi) played a vital role in the development of the CRPD. DSi Trustees Penny Robertson and Dan Weeks represented the organization at the UN negotiations, and they worked tirelessly to ensure that the voices of people with Down syndrome were heard. The CRPD was opened for signature on March 30, 2007, and it was met with an unprecedented response. On its opening day, the Convention was signed by 82 countries and 44 countries signed the Optional Protocol. This was the highest number of signatories in history for a UN Convention on its opening day. The CRPD entered into force on May 3, 2008, and it has since been ratified by over 180 countries. The Convention has had a transformative impact on the lives of people with disabilities, and it has helped to create a more inclusive world for everyone. Here are some of the key achievements of the CRPD: It has helped to raise awareness of the rights of people with disabilities and to challenge discrimination. It has led to the development of new laws and policies that promote the inclusion of people with disabilities in all aspects of society. It has helped to improve access to education, employment, healthcare, and other essential services for people with disabilities. It has empowered people with disabilities to advocate for their own rights and to participate fully in society. The CRPD is a living document, and it continues to evolve as we learn more about the needs and rights of people with disabilities. DSi remains committed to working with governments, organizations, and individuals to ensure that the CRPD is fully implemented and that all people with Down syndrome have the opportunity to live full and meaningful lives. A World Where Everyone Belongs The CRPD is a beacon of hope for people with disabilities around the world. It is a testament to the power of international cooperation and to the belief that everyone deserves to live with dignity and respect.
2007-2009 Expand Our first outreach programme. In late 2007, BG Group Libya (BGL) reached out to DSi, seeking support for the Libyan Down Syndrome Association (LDSA), a fledgling non-governmental organization founded by parents of children with Down syndrome. Driven by a shared belief in the right of all people with Down syndrome to live fulfilling lives, DSi sent two Board members to Libya in May 2008 to conduct an initial needs assessment. Their findings paved the way for a second visit in early 2009 by a team of five DSi specialists. The team initially delivered workshops on a range of topics, but after feedback from LDSA and extensive discussions with all stakeholders, they tailored their presentations to meet the specific needs of the Libyan audience. Upon their return, the DSi team compiled a detailed report outlining key recommendations for LDSA. The report sought to build on the LDSA's existing foundation and help it develop into a robust and knowledgeable organization that could provide sound advice and assistance to people with Down syndrome, their families, and all others in Libya with an interest in Down syndrome. The DSi team's visit to Libya was a watershed moment for the LDSA and the Down syndrome community in the country. It planted a seed of hope, inspiring Libyans to work together to create a more inclusive world for people with Down syndrome. 10th World Down Syndrome Congress In August 2009, the 10th World Down Syndrome Congress was hosted in Dublin, Ireland. The theme of the Congress, "Lifelong Living and Learning," reflected DSi's commitment to supporting people with Down syndrome to live fulfilling lives at every stage of their development. One of the highlights of the Congress was a keynote address by Dr. Maria Montessori, the renowned Italian educator who developed the Montessori teaching method. Dr. Montessori spoke about the importance of creating inclusive learning environments where all children, regardless of their abilities, can thrive. Another memorable moment from the Congress was a performance by the Down Syndrome International Choir, a group of talented singers from around the world. The choir's performance was a moving testament to the power of music to bring people together and to celebrate the unique gifts of each individual. A new 'home' for DSi. In November 2009, DSi moved to new offices in Teddington, England. The building was once the home of Dr. John Langdon Down, the pioneering Victorian physician who first identified Down syndrome in 1862.
2010 Expand Members of the DSi board accompanied Maria Alejandra Villanueva, a self-advocate from Peru, to the Conference of State Parties to the Convention (COSP). Maria's right to vote has been withdrawn by the authorities. Maria said she was speaking on behalf of all people without the right to participate in national political life, describing herself as one of the thousands of Peruvians excluded from electoral lists and denied the right to vote. “I want to fight to change this — for me and other persons with disabilities. I want to be considered a citizen.” LEARN MORE
2011 Expand In December the United Nations General Assembly declared 21 March as World Down Syndrome Day (WDSD), a resolution proposed and promoted by Brazil, following a request by the Brazilian Federation of Associations of Down Syndrome, who worked with DSi and our members to launch an extensive campaign to generate international support. Visit the official World Down Syndrome Day website: World Down Syndrome Day
2012 Expand In March we organised the first WDSD Conference at United Nations HQ in New York, United States. 2012 conference theme “Building Our Future” In August, we were in Cape Town, South Africa for the 11th World Down Syndrome Congress.
2013 Expand In March we organised the 2nd WDSD Conference at United Nations HQ in New York, United States. 2013 conference theme “Right to Work” In April we visited Tajikistan to deliver education training. TAJIKISTAN EARLY DEVELOPMENT
2014 Expand In March we organised the 3rd WDSD Conference at United Nations HQ in New York, United States. 2014 conference theme “Health and Wellbeing –Access and Equality for All” In October we visited Oman to deliver healthcare training. OMAN HEALTH TRAINING
2015 Expand In March we organised the 4th WDSD Conference at United Nations HQ in New York, United States. 2015 conference theme "My Opportunities, My Choices" – Enjoying Full and Equal Rights and the Role of Families In August we were in Chennai, India for the 12th World Down Syndrome Congress.
2016 Expand In March we organised the 5th WDSD Conference at United Nations HQ in New York, United States. 2016 conference theme “My Friends, My Community” – The benefits of inclusive environments for today's children and tomorrow's adults DSi supported the establishment of Rwanda Down Syndrome Organisation. RWANDA ORGANISATION SUPPORT
2017 Expand In March we organised the 6th WDSD Conference at United Nations HQ in New York, United States. 2017 conference theme "My Voice My Community" – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community Also in March we organised the first WDSD event at United Nations in Geneva. We visited Turkey to deliver our first self-advocacy training. TURKEY SELF-ADVOCACY We worked with Sociedad Peruana de Sindrome Down in Peru to deliver our parent support project. PERU PARENT SUPPORT
2018 Expand In March we organised the 7th WDSD Conference at UN HQ in New York and the 2nd side event at the Human Rights Council, UN, Geneva, Switzerland. 2018 conference theme "What I bring to my community" In June we returned to Turkey to deliver follow-up self-advocacy training. In July we were in Glasgow, Scotland for the 13th World Down Syndrome Congress. In November we visited Nigeria to deliver self-advocacy training. NIGERIA SELF-ADVOCACY In December we worked with Down Syndrome Association of Nepal to deliver our early development project. NEPAL EARLY DEVELOPMENT
2019 Expand In March we organised the 8th WDSD Conference at UN HQ in New York and the 3rd side event at the Human Rights Council, UN, Geneva, Switzerland. 2019 conference theme "Leave no one behind" A draft copy of our international Education Guidelines was formally presented to a senior representative of UNICEF at the conference in New York. EDUCATION GUIDELINES In June we returned to Nigeria to offer further self-advocacy training supported by our newly recruited Self-Advocate Fellow George Basil Okudi. We also visited Bangladesh to deliver self-advocacy training. BANGLADESH SELF-ADVOCACY In August the DSi Board members and staff meet to review our strategy and plan for the years ahead. In September we visited the UAE to deliver self-advocacy training ahead of the 14th World Down Syndrome Congress which will be held in Dubai in November 2020. UAE SELF-ADVOCACY In October we launched a fundraising project to enable the Rwanda Down Syndrome Organisation (RDSO) to train family members and teachers in Rwanda to support the development of children with Down syndrome. RWANDA EARLY DEVELOPMENT Also in October we visited Kosovo to deliver self-advocacy training. KOSOVO SELF-ADVOCACY In November we returned to Bangladesh for the second training workshop of our project supporting the Down Syndrome Society of Bangladesh to start their first self-advocacy group. BANGLADESH SELF-ADVOCACY
2020 Expand In January DSi visited Nairobi, Kenya to launch our new Employment Advocacy project with the Down Syndrome Society of Kenya and other national organisations in Africa to ensure that people with Down syndrome are included in the workplace. We began training in September and will continue into 2021. EMPLOYMENT ADVOCACY In February we returned to UAE to follow up on the self-advocacy training that begun in September 2019. UAE SELF-ADVOCACY In March we organised the 9th WDSD Conference. For the first time, due to the COVID-19 crisis, this was a virtual event. 2020 conference theme "We Decide" World Down Syndrome Day Virtual Conference As the year progressed we shifted a large portion of our resources to respond to the evolving situation with COVID-19 and to support our members and the global Down syndrome community during these difficult times. COVID-19 response In July we published our long awaited International Guidelines for the Education of Learners with Down Syndrome. EDUCATION GUIDELINES Also in July we launched our #ListenIncludeRespect project working together with Inclusion International developing guidelines for inclusive participation. Inclusive participation In September, in response to the COVID-19 pandemic, we launched a project with CAST, in which we explored the barriers that people with Down syndrome face when they want to participate in the work of organisations remotely. We developed digital solutions and with funding from The National Lottery Community Fund, we will start turning our prototypes into reality in 2021. CAST project Throughout 2020 we have supported Nazari Digar, one of our member organisations in Tajikistan, to plan their advocacy for 2021 TAJIKISTAN ADVOCACY Our National Representatives with Down syndrome have been incredibly busy through 2020 in their role in informing and guiding the work that we are doing. You can learn more about our National Representative Committee and watch a video they have made about their role here: National representatives with Down syndrome
2021 Expand In January, DSi was delighted to publish the first set of Education project toolkits to help translate and promote the use of the International Guidelines for the Education of Learners with Down Syndrome. Soon after in March, we celebrated our first translations into French and Bosnian languages. Other translations are in the pipeline. Education In February, we were delighted to see an article published in the Journal of Cardiology about our cardiac work. Cadiac consensus document In March we organised the 10th World Down Syndrome Day Conference. For the second year in a row, this was a virtual event in line with COVID guidelines. 2021 conference theme "Connect" World Down Syndrome Day conference In June we published a statement calling for the prioritisation of people with Down syndrome in the COVID-19 vaccination programme and worked with our global network of member organisations to advocate for vaccine prioritisation in their jurisdictions. COVID-19 vaccination prioritisation Also in June we were delighted to see the launch of the new Down's Syndrome Association (England, Wales and Northern Ireland) website which we worked with them to plan and create over the past 2 years. In September we launched our UK-based pilot study to share the key messages of the International Guidelines for the Education of Learners with Down Syndrome with key education stakeholders. Inclusive education pilot study In September we published a case study on the best practices in inclusive employment of people with intellectual disabilities, this one based in Bangladesh. We have been working with self-advocates in Bangladesh and in several African countries to advocate for inclusive employment. Inclusive employment In November we enjoyed the exciting and informative World Down Syndrome Congress 2021, hosted by Emirates Down Syndrome Association. WDSC 2021 We are making progress on our inclusive participation project work by researching apps to enable people with Down syndrome and organisations to interract. Inclusive participation with CAST
2022 Expand In January, we celebrated the translation of our International Guidelines for the Education of Learners with Down Syndrome into Albanian. EDUCATION GUIDELINES In March we organised the 11th World Down Syndrome Day Conference. 2022 conference theme "#InclusionMeans..." Find out about our #InclusionMeans campaign and watch the presentations delivered at the 11th World Down Syndrome Day Conference in New York, 21 March 2022: #InclusionMeans In May, we launched Kami, the world’s first virtual influencer with Down syndrome. Kami’s mission is to revolutionise the digital world, making it an inclusive and welcoming place for people with Down syndrome. Introducing Kami In June, we launched the Listen Include Respect guidelines at COSP15 (Conference of State Parties to the Convention on the Rights of Persons with Disabilities). The guidelines will help organisations of all types to be more inclusive of people with disabilities. From producing and delivering accessible information, to running inclusive meetings, to including people with intellectual disabilities in consultations. We are currently working with self-advocates to develop online training to accompany the guidelines. This is a joint project with Inclusion International. LISTEN INCLUDE RESPECT WEBSITE We have chosen to lead by example by completing a review of how inclusive DSi is of people with Down syndrome. We are using this review to make a plan to improve our inclusive practice, which will be reviewed and updated each year. In August we completed our Inclusive Education pilot study in the United Kingdom. The study explored how the existing education system caters to children with additional needs. We have produced 50 video resources and more than 40 written resources that will be published in 2023. These will be relevant to education systems around the world. Our Employment work this year has been focused on 4 countries - Kenya, Nigeria, Rwanda, and Uganda. Our team has worked with the National Down syndrome organisations and their self-advocacy groups to conduct interviews, focus groups, and surveys, and to carry out employment advocacy activities, speaking up about their right to employment to key stakeholders in their country. Research reports about the barriers and good practices in the inclusive employment of people with intellectual disabilities will be launched in January 2023. We have worked with our team of Ambassadors to carry out research into the current situation with self-advocacy in their countries. The research will help us make a plan for how we can promote self-advocacy around the world. In 2023 we are going to develop a new online self-advocacy training, then work to create opportunities for self-advocacy groups around the world to meet and share ideas and experiences. Throughout 2022, the DSi team has been working on a new strategy for the organisation. The strategy will support our vision for the world and our plan to contribute to this change. We are excited to share more about our new strategy in 2023!
2023 Expand National Down syndrome organisations from Kenya, Nigeria, Rwanda, and Uganda launched their research reports into 'Best practices in the employment of persons with intellectual disabilities'. You can watch the launch events here: UGANDA KENYA In March we celebrated World Down Syndrome Day and organised the 12th World Down Syndrome Day Conference. 2023 theme - The right to legal capacity, supported decision-making and easy-to-understand communication. Find out about our campaign and watch the presentations delivered at the 12th World Down Syndrome Day Conference in New York, 21 March 2023: WDSD 2023 We are continuing work on our new strategy for DSi. We are excited to share more about our new strategy later this year. In October 2023 we will be celebrating 30 years of DSi! Watch this space to find out what we have in store.