As 2023 draws to a close, we at Down Syndrome International (DSi) are reflecting on our remarkable journey. 

We look back, not just at 2023, but at three decades of advocacy and family leadership.


Celebrating 30 years of DSi!

In 1993, three remarkable women, Jo Mills, Penny Robertson, and Sylvia Escamilla, started a movement that would change the lives of individuals with Down syndrome around the globe. The three women knew what was possible for people with Down syndrome.

They founded DSi, driven by a shared vision of an inclusive society. The DSi network has since grown into a global force, uniting thousands of individuals with Down syndrome, their families, and dedicated allies. 


A new strategy to achieving our goal.

The DSi Network shares a goal for people with Down syndrome and their families around the world to have a say in all laws, policies and other decisions that affect them.

We launched our new strategy this year, guiding our work for the next 10 years. Our strategy will ensure we can do our work, knowing it will contribute to our shared goal.

Our strategy


A Commitment to Inclusive Leadership

We are committed to making DSi an inclusive organisation led by people with Down syndrome and their families in their communities. 

This year, we have welcomed self-advocates Emma Bishop and Janet Charchuk to our leadership team. We proudly welcome Janet Charchuk (Canada) to the DSi Board. She will provide valuable insights and lived experience. Our commitment to inclusive representation reflects our core principles. It ensures that the voices of those we serve are heard at the highest levels.


World Down Syndrome Day

The 2023 campaign for World Down Syndrome Day (WDSD) advocated for legal capacity, supported decision-making, and promoted easy-to-understand communication. 

We brought our message to the United Nations, highlighting the importance of these rights for people with Down syndrome and intellectual disabilities.

2023 campaign

For WDSD 2024, we will call for Health Equity for People with Disabilities.  

We will support self-advocates worldwide to speak up about their experience.

2024 campaign


This year, in inclusive health

We have collaborated with an international team of cardiologists (heart experts) to write a review of the recommended treatment of cardiovascular (heart) conditions in people with Down syndrome.

We are delighted that the review has been published in the top cardiology journal, Circulation!

You can read the full article in the Circulation journal here.


This year, in inclusive education

Our UK Network member, The Down’s Syndrome Association (DSA - England, Wales, and Northern Ireland), is building on our Inclusive Education project to share resources to support teachers, SENCOs, school leaders, and people with Down Syndrome and their families. 

These resources are available on the DSA website here.


This year, in inclusive employment

Our 2-year self-advocacy-focused employment programme ended with webinars discussing the barriers faced by people with intellectual disabilities in Africa and Bangladesh in accessing employment. 

These results will serve as a powerful example for other organisations working in development to make their work more inclusive.


This year, in inclusive organisations

We are committed to promoting inclusive organisations, ensuring that people with intellectual disabilities have a say in policy-making processes. 

To achieve this, we are training self-advocates to become consultants in inclusive organisations. They will support government organisations to better include people with intellectual disabilities in their work.

Joe and Catherine are the first new members of this team. They are supported by DSi trainer and consultant, Tia Nelis. Learn more about this project here.

We have taken part in key events in 2023 to advocate for inclusion in the work of organisations:

In February, self-advocate Bethan Kendrick represented DSi at the Zero Project Conference. Bethan spoke about easy-to-understand communication and its importance in an inclusive society.

In June, the DSI team supported self-advocates Vinicius Streda and Olivia Sidhu in speaking up about their right to easy-to-understand communication at the 16th session of the Conference of States Parties (COSP16). Vinicius and Olivia spoke about the barriers to accessible communication that people with intellectual disabilities face. They shared good practices and recommendations for easy-to-understand communication.

In August, we were invited to the International Congress and Convention Association (ICCA) Middle East Summit to discuss inclusive conferences. DSi Ambassador for the United Arab Emirates, Chaica Al Qassimi, spoke about the Listen Include Respect guidelines for inclusive conferences.


 

We were pleased to collaborate with the World Federation of the Deaf and Inclusion International on a new position paper. This position paper has been made to explain that deaf people with intellectual disabilities have specific rights and that they should be fully included in their communities. Learn more about this work here.


World Down Syndrome Awards

This year, we launched the World Down Syndrome Awards to celebrate projects, achievements, or practices that improve the lives of people with Down syndrome. We received over 200 nominations!

The awards committee, which included people with Down syndrome and their family members worldwide, chose five awardees.

Meet the awardees: 

2023 AWARDEES


World Down Syndrome Congress (WDSC)

We have been working closely with the team at Down Syndrome Australia to prepare for the next WDSC, which will take place in Brisbane on 9-12 July 2024. 

This promises to be an educational and informative event that brings together leading international experts and advocates in various fields.

You can learn more, register to attend and even apply to present at the Congress on the official website.


Thank you, and welcome!

I want to extend my heartfelt gratitude to our staff team, network of member organisations, fellow Board members, and fantastic Ambassadors for their unwavering dedication and commitment to making the world a more inclusive place for people with Down syndrome. 

Special thanks to our Ambassadors Robert Cem Osborn, Favour Jideonwor and Kayla McKeon, who have moved on from their role this year. And a big welcome to our new Ambassadors  Halis Güney (Turkey), Moyosore Ijale (Nigeria), Charlotte Woodward (USA), Carla Mertz Salomón (Peru) and Pearl Lüthy (Switzerland).

Welcome also to our new network members - Skill Up Training Center in Sudan, Down Syndrome Support Health Association in Nepal, and Up For Down's China.

And finally, thanks to you for being a part of our journey.

Together, we will continue to pave the way for a world where every individual with Down syndrome has the opportunity to thrive.

If you would like to support our work in 2024, you can donate here.

 

I appreciate your support.

Bridget Snedden
President of DSi

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