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APDSF Celebrates World Down Syndrome Day

As we prepare for World Down Syndrome Day 2025, observed annually on 21st March, we are excited to invite you to join us in making this celebration truly impactful. This year’s theme is “Improve Our Own Support Systems,” emphasizing the importance of strengthening and enhancing the resources and networks for individuals with Down Syndrome and their families.

To ensure a vibrant and meaningful celebration, we encourage each member country to:

  1. Organize Activities: Plan innovative and meaningful initiatives aligned with the theme. Examples could include community engagement programs, awareness campaigns, inclusive sports or arts events, or capacity-building workshops.
  2. Showcase Your Work: Share photos, videos, and reports of your activities with us. We will feature these on the APDSF website and social media to highlight the incredible work being done across the region.
  3. Submit Celebration Ideas: Share creative ideas for how we, as a body can collectively celebrate the day in our local communities.

Exciting Awards to Recognize Your Efforts

To honor and encourage outstanding contributions, we are delighted to announce the following awards:

  • Award for the Best Activity this WDSD:.
  • Award for the Best Celebration Idea:
  • Special Recognition Awards for outstanding creativity and impact.

Submissions will be reviewed by a panel of experts, and the winners will be announced by end of the month.

Submission Deadline

Please submit details of your activities and ideas by 14 March 2025 to ensure they are considered for the awards and featured in our celebration plans.

Let us come together to make World Down Syndrome Day 2025 an inspiring event that highlights the creativity, resilience, and unity of our community. Your participation is vital to making this a memorable and impactful occasion.

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Asia Pacific Down Syndrome Federation AGM – A Successful Gathering in Kuala Lumpur

The Asia Pacific Down Syndrome Federation (APDSF) Annual General Meeting was held successfully in Kuala Lumpur, Malaysia, bringing together 17 countries committed to advancing the welfare and opportunities for individuals with Down Syndrome. Participating nations included:

Australia, Bhutan, China, India, Indonesia, Japan, Malaysia, Mongolia, Nepal, Pakistan, Philippines, Singapore, Sri Lanka, Taiwan, Thailand, UAE, and Vietnam.

Day 1: Engaging Sessions and Cultural Exchange

The event commenced with Country Reports where delegates shared updates, challenges, and success stories from their regions. Simultaneously, an engaging Art Session was conducted by Dr. Esther Joosa.

Dr. Marco Roncarati, Social Affairs Officer at the United Nations ESCAP Staff Association, delivered a thought-provoking session on “Enhancing Intergenerational Solidarity and Benefits by Better Understanding Psychosocial Issues.”

The day concluded with vibrant Cultural Events, where participating countries showcased their unique talents from their respective countries, followed by a delightful APDSF Delegates Dinner.

Day 2: Key Discussions and Insights

The second day began with the APDSF Annual General Meeting, which included:

  • Attendance and confirmation of previous meeting minutes
  • An opening address by the President
  • Reports from Secretary General Shri Ashish Bengra, IPS (Retd.) and the Finance Committee
  • Discussions led by the Medical Committee Chair on outcomes and future directions

In the afternoon, Dr. Surekha Ramachandran delivered an inspiring talk on Self-advocacy and how it was important for parents to understand their children and stand by them.  Her insights on the role of strong parental support resonated deeply with attendees, many of whom vowed to share these lessons with their communities.

Success and Reflections

The AGM concluded with renewed energy, collaboration, and commitment from all delegates. The participants departed with new knowledge, stronger networks, and a shared vision for improving lives. A proposed sightseeing tour was also planned to enrich the cultural experience of visiting delegates.

The event was a remarkable success, leaving everyone with valuable takeaways and strengthened ties within the APDSF community.

Country Reports

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Special Olympics Summit Malaysia

RALC 2024

It’s Proud moments for us Rithik Hukku Athelete leader and Me Dr DC Gupta Mentor participate in this prestigious international summit of 22 countries of asia pacific region with our Indian delegation team Mrs Mallika Nadda president, Mrs Mukta National Director, Mahi & Simran youth leader, Mrs Richa executive of special Olympics Bharat.

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One Extra Chromosome, One Extra Reason to Celebrate!

October is Down Syndrome Awareness Month, a time to promote understanding and acceptance of individuals with Down syndrome. This month highlights the importance of inclusion, support, and respect for those with this genetic condition, which results from an extra copy of chromosome 21.

Advocates and organizations raise awareness through events, campaigns, and educational initiatives, aiming to dispel myths and showcase the capabilities of individuals with Down syndrome. By sharing stories and experiences, the community emphasizes joy, creativity, and resilience, encouraging society to embrace diversity.

You can get involved by participating in local events, sharing information on social media, or learning more about the experiences of those with Down syndrome. Together, we can foster a more inclusive world where everyone is celebrated for their unique contributions. Join us in recognizing the strengths of individuals with Down syndrome and advocating for their rights and opportunities this October and beyond.

Here we request countries to share the Awareness drive in your countries.
Find below excerpts from India

Click on the link to Know more…
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Minutes of the Zoom Meeting – 10 June 2024

Date – 10 June 2024

Attendees – Mr. Paul Zanon (advisor), representatives from India, Nepal, Sri Lanka, Bangladesh, Pakistan, Singapore, Japan, UAE, Philippines and Malaysia.

Agenda – APDSF AGM at Kualalampur – Discussion points during the AGM.

Mr. Paul Zanon, advisor, APDSF began the meeting by thanking all present. Following points were discussed.

  1. Dr. Bhavani Sriram suggested discussions on creation of the Down Syndrome registry, Issues of Mental health and Ageing, 
  2. Mr. Luis Harder from Philippines suggested topics of discussion to cover assisted care, education employability and semi-independent living.
  3. Dr. Lalita Joshi from Nepal spoke about the main problem being the registry system
    1. In Nepal, DS comes under intellectual and developmental disability.
    1.  Numbers are only assumptions since there is no exact data. So, without data receiving benefits becomes difficult
  4. Mr. Zanon emphasized on the importance of empowering people with knowledge on how DS is different from other disabilities. It is the only form of disability which is instantly recognizable and is often used as the face of pan learning disability, which comes with its issues – mainly due to the fact that DS has its own individual spectrum of ability and conditions, specific to DS, which differentiate it from general LD.
  5. Dr. Surekha Ramachandran said that India faced the same issue of DS falling under Intellectual Disability. However Intellectual Disability does not define DS.
  6. Mr. Zanon pointed out that in most cases a person with DS is showcased on the marketing literature depicting Learning Disability. He suggested some noise to be made in the UN also to make progress in regard to creating a separate disability.
  7. Dr. Ramachandran said that India has stared organizing sporting events specifically for DS. There is a need to remove DS from Intellectual Disability.
  8. Mr. Tariq from Pakistan shared the disability certificate from Pakistan where the PwD was asked for the percentage of disability.
    1. PwDS are excluded from this since they look fine physically.  
    1. They therefore find it difficult to get Disability certificate. They are refused registration as PwDS.
    1. He wanted to APDSF to discuss this and get ideas.
  9. Mr. Zanon said that the discussions could be there. However, no solution can be promised.
  10. Mr. Sardar Razzak from Bangladesh said that in Bangladesh, the Ministry of Social Development had categorized disability into 2 groups – Physical disability and NDD –
    1. NDD – Autism, DS, ID and CP.
    1. Govt. has taken this as a law since 2013.
    1.  Separate identification for all is available
  11. The Problem here is the numbers according to govt. records is much lower.
    1. Person who identifies does not know during registration.
    1. DS is then put under multiple disabilities.
  12. PZ then mentioned how education becomes important in this area. A 2-step approach is important.
    1. Training of these people who need to identify disabilities is crucial
  13. Dr. Dayaratne from Sri Lanka said that the  same problem in recognition is there in Sri Lanka too.
    1. There is no standard way of initial diagnosis and no proper records.
    1. He wanted a detailed discussion for a common protocol in the region to have genetic confirmation of DS/other genetic issues
    1. He mentioned the ageing population with DS as another important point of discussion
  14. Mr. Galgamuwa from Sri Lanka mentioned about clubs they planned to start specifically for Down syndrome, but they have been able to form only 10.
    1. They are  doing this along with the Youth club.
    1. Difficult due to Rural/urban divide.
    1. They are planning in rural areas since urban areas have many centers, courses etc.
    1. Ageing is a big problem now. Dementia etc.
    1. Guidelines for setting standards for setting these centers can also be discussed.
  15. Mr. Sardar Razzak spoke about discussions on Inclusive education.
    1. Trying non-formal education for PwDS. Difficult for formal academic education.
    1. APDSF can come up with an education guideline for the region as regular education system is difficult.
  16. Mr. Zanon then broached the topic of Care for persons with DS.
    1.  Sibling taking care is not easy.
    1. The care available for people with DS should be discussed and best practices can be shared. 
  17. Dr. Ramachandran mentioned about how in India due to the largeness of the country and the differences in  language, food, culture, families from same state (5) meet and plan for future. Financial and social sharing for families living together which would work better instead of creating large group homes.
  18. Mr. Galgamuwa said that Sri Lanka also went by the same principles. Families and government collaboration at the local level to create welfare clubs was useful. Smaller numbers where grass root level staff like teachers, gram sevaka etc to be a part of the board of the group.
  19. Mr. Zanon agreed that small numbers will be more productive. Exchanging best practice our goal at APDSF meetings and advanced care planning to be a point of discussion.
  20. Dr. Joshi from Nepal opined that health and education go together. Health of the self-advocate is important. But parents’ health also to be considered.
    1. Parent education on caring for them is important.
    1. In Nepal, areas where they cannot reach, counselling is provided over the phone, however, how much is understood is a big question. Therefore. educating parents and volunteers who meet these families is crucial.
  21. Education has to be discussed
  22. Another important aspect mentioned by Malaysia was Vocational training and employment.
  23. Independent life skills as an area should also be shared during these meetings.
  24. An Art Exhibition at Kualalampur is planned for self-advocates –Art expert and curator,  Ms.Esther Joosa (https://www.artsofthearth.org/about-arts-of-the-earth) will have a session with both parents and self-advocates.
    1. All art work to be shared with us. That will be displayed. 
    1. Virtually, we can keep circulating on Social media.
    1. Self-advocates have to come for the sessions from the various countries.
    1. Art work guidelines will be shared soon.
  25. Dr. Ramachandran emphasized on the Self-advocates’ program.
    1. Time for every country to bring at least 6 Self-Advocates to talk about their experiences.
    1. Not only artists, but all who want to know what is happening outside.
    1. She wanted to know from Malaysia what they expect from APDSF and what APDSF could offer. Malaysia shared about Employment and Vocational training. Could do a workshop there if Malaysia so desires/.
  26. Mr. Galgamuwa was of the opinion that we could have local self-advocates and their parents who can interact with the members of the APDSF. At least 20-30 parents to discuss ideas and experiences.
  27. Ms. Joyce from Malaysia offered to have different sessions as per the need.
  28. Dr. Ramachandran suggested that on one of the evenings, families can get together to interact with one another.
  29. Mr. Zanon then thanked Malaysia and ended the meeting on a productive note.
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APDSF AGM 2024 – pre event

APDSF organizes its annual AGM in various countries so as to reach out to the local population and provide them support through the expertise held by the members. Last year the AGM was at Nepal where training was provided by experts from APDSF – Speech Therapists, Adult rehab professionals, Special Educators, counsellors and pediatrician- to the local therapists. The event was a success with follow-up online sessions being planned for these local therapists to hone their skills. There was a lot of learning and sharing of information that happened at the AGM.

APDSF would like to connect with the local bodies in order to provide guidance through the expertise of member countries to benefit the local population. At Malaysia too APDSF is holding hands with local support groups to further the cause and provide as much information and support as we can. The local bodies also showcase the talent of their self-advocates with Down syndrome to the representatives from the various countries so they can also learn and take back some experiences.

We have a Medical Committee Meeting chaired by Dr. Bhavani Sriram from Singapore, where we discuss the various medical issues in member countries and the solutions thereof. We have each country presenting their reports and the APDSF AGM.

The meetings are for 2 days . One day where we have the Medical Committee Meeting and the country reports and the next day, we have the AGM. We usually also organize a tour of the city for the guests where they can go for local sight-seeing/shopping etc.

This year APDSF plans to make the AGM more encompassing.

WHAT WE WOULD LIKE TO DO FOR APDSF AGM 2024

  • Last year at our AGM in Kathmandu, we had done a camp for therapists from Nepal who had come from all parts of the country and experts from the APDSF had conducted sessions for them. Based on the requirement of the local bodies, we would like to organize something that would benefit the Malaysian team.
  • There are also plans for self-advocacy sessions by persons with Down syndrome they can interact and discuss various things relevant amongst them with a moderator. We are also looking at having a meet and greet with the local parents and self-advocates where interaction among the various delegates and local population will help understand the various developments that we can take back to our respective countries.
  • We also intend organize an art exhibition by our self-advocates with Down syndrome from across the Asia Pacific region. Curated by noted curator Ms. Esther Joosa, this is one program that would be an experience to remember for all the parents and self-advocates attending the event.

We intend the AGM at Kualalampur to be a learning experience for all countries that attend the event. A Zoom meeting was convened to understand what delegates wanted to discuss at the meeting and a lot of positive points emerged. To know more CLICK HERE

APDSF AGM 2024

  • The venue for the AGM is Hotel Mercure Kuala Lumpur Shaw Parade, a Four star property, which is about 45 minutes from the  International Airport.
  • The check in would be on the 5th of December and check out on the 8th of December 2024.
  • Only two (2) members from each country would be hosted by the APDSF
    • Please share the names of the participants of the AGM LATEST BY 30th JUNE 2024 to enable us make the necessary arrangements. Fill in the details in the form link provided – https://forms.gle/11NRQcvFkr4WcWh39
    • If there are other members who would like to come for the event, they need to make their own arrangements
  • We would be requesting for flight details closer to the event for providing airport pick-up and drop for the two registered members.
  • The rooms will be provided on a twin sharing basis to all participants.
  • The Medical Committee Meeting will be organized on the 6th of December 2024 and the AGM would be on the 7th of December 2024. Detailed agenda would be shared closer to the date of the event
  • This time, we are planning an art session for self-advocates with Down syndrome. We would like to know how many self-advocates from your country would like to participate?
    • Please note, the arrangements for their stay and travel will have to be made by them
    • They would be given an opportunity to learn and also showcase their art work at the venue
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APDSF AGM 2023

The APDSF AGM 2023 was organized at Kathmandu, Nepal in association with the local body  -DSSHA was attended by 10 countries – India, Nepal, Pakistan, Bangladesh, Sri Lanka, Thailand, Mongolia, Singapore, Australia and UK represented by the advisor of APDSF, Mr. Paul Zanon.

The inauguration of the event was with a speech by self-advocate Ashish Joshi. That was followed by a dance performance by self-advocates – a solo performance by Mr. Ashish Joshi and a group dance by some enthusiastic participants. Graceful and charming, the self-advocates showed those present that they could do anything if given an opportunity. The Chief Guest of the event was the Honorable Deputy Mayor of Kathmandu, Ms. Sunita Dangol. She was inspired and amazed at the talent displayed and promised to support persons with Down syndrome in whichever way she could. She requested all parents and those present to reach out to her and she would try to get the required action taken by the Government.

This time, the idea was to support local therapists by assisting them with information and training which therapists from India and Singapore provided. There were about 25 local therapists who took advantage of this. Since both India and Singapore have well-established therapy regimes for children, it was but natural that both these countries joined hands to provide this training. It has been planned to have these kinds of training for any location that hosted the APDSF AGM. The various presentations at Kathmandu are being shared here for the benefit of everyone.

Another interesting session was the discussion on the Fitness of our self-advocates. Col. Subash Thapa of Nepal spoke to the gathering about his plans on helping self-advocates reach Everest Base Camp. This is the follow-up on the first ever Downs Mountaineering workshop organized by him in association with DSFI.

The AGM also had its regular medical committee meeting where it is planned to create Guidelines for the entire region on Post Natal Counselling. This should be ready by November. Collaborations with other organizations was also discussed to help and support more persons with Down syndrome.

The next AGM is scheduled to be organized in 2024 at either Singapore or Malaysia depending on collaboration with some other bodies that are being planned.

Presenting a few glimpses from the event.

Training children with Down Syndrome – Hemamalini V S, Special Educator – Read More…

Speech and Language Therapy An Insight Into Early Intervention – Sharanya Krishnan, Consultant SLP – Read More…

DOWN SYNDROME Diagnosis Management Prevention – Dr.M.PRADEEPKUMAR MD (Paed).,DCH.,FCG.,
Consultant Geneticist – Read More…

Behavior Modification Positive Redirection – Read More…

Teaching Reading and Numeracy skills – Hemamalini V S, DSFI Chennai – Read More…

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Queen Mary-led research uncovers why people who have Down’s Syndrome age prematurely

An overdosed gene on chromosome 21 causes people with Down’s Syndrome to age faster than the general population.

Published on:  13 July 2023

” Molecular processes responsible for natural ageing of cells are poorly understood. Studying conditions in humans where ageing is accelerated due to genetic causes presents opportunities to learn about the mechanisms that control ageing and devise strategies to slow down the ageing process.

Adults who have Down’s Syndrome (DS) show earlier signs of ageing-related conditions: reduction in tissue regenerative capacity, alopecia, dry skin, delayed wound healing, chronic gum disease, osteoporosis, senescence of the brain and immune cells. DS is a genetic, but not inheritable condition, caused by being born with an extra copy of chromosome 21 (trisomy 21). It affects around 7 million people worldwide (around 60,000 in the UK).

DS is the most frequent genetic cause of intellectual disability and early onset Alzheimer’s disease. While increased risk of early Alzheimer’s is clearly caused by an extra copy of the amyloid precursor protein gene (APP) encoded on chromosome 21, the genetic basis for the other conditions is not easily explainable.

New research published in the Lancet Discovery journal eBioMedicine, led by Queen Mary’s Professor Dean Nižetić and Dr Aoife Murray, with collaborating institutions from Croatia, Singapore, France, Italy and four other London universities, has uncovered an overdosed gene on chromosome 21 causes cells of people with DS to age prematurely.

The study has shown that biological age of people who have DS is on average 19.1 years older than the chronologically age-matched people who don’t have DS. The research has also shown that this is not caused by co-morbidities of DS, and that the premature ageing process starts very early in childhood. The gene for a kinase (a type of enzyme that speed chemical reactions in the body) called DYRK1A was identified as the main cause of the premature ageing component of DS, showing that this gene’s overdose disturbs the DNA-damage-repair mechanisms, causing cells to develop more breaks in their DNA and fragility of their cell nuclei.

Dean Nižetić, Professor of Cell and Molecular Biology at Queen Mary, said:

“We have uncovered that trisomic overdose of this gene (DYRK1A) is one of the main contributors to premature biological ageing in DS. Further research is needed to understand how much this contributes to brain development and function, and also in finding ways of precisely inhibiting the overdose of this gene back to physiological levels. This could open exciting new possibilities for early interventions in DS, but a lot more research is needed.”

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APDSF AGM 2022

The APDSF AGM was organized on the 3rd and 4th of December 2022 at the ITC Grand Hotel, Chennai.

The APDSF AGM is organized in a member country every year. However due to the pandemic it was done virtually in 2020 and 2021. It is after 2 years that a physical AGM has been organized. The aim of the AGM is primarily to apprise countries about the goings-on in the region and how we can learn from one another about things to do and what has worked for persons with Down syndrome in a country and how it can be done in one’s own country.

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About APDSF – Some key points

  1. The APDSF is into Advocacy/lobbying for the rights of persons with Down syndrome.
  2. We hold a CONSULTATIVE STATUS with the Economic And Social Council (ECOSOC) of the UNITED NATIONS.
  3. APDSF began as a collection of members from various countries who used to meet informally once a year to discuss issues related to Down syndrome in their respective countries.
  4. APDSF became a formal registered body in 2017 with Mr. Ramachandran elected President.
  5. PDSF was registered under the Tamilnadu Societies Act and came into existence as a formal body on 4-March 2017.

The aim of the APDSF is as follows:
a. To create and develop the conditions which will enable people with Down Syndrome to live full and rewarding lives and attain their full potential in the Asia Pacific region.
b. To create Parent Support Groups across the region for parents to have a community that can support one another through any time.
c. Providing assistance to children with Down Syndrome to improve their skills and to develop their skills in sports.
d. To arrange for conferences and lecture meetings or topics of interest for Down Syndrome children/parents with Down Syndrome Children.
e. To undertake the charitable activities in connection with the Down Syndrome in the Asia Pacific region.
f. To become member of similar Federations for improving the objects of the Federation.
g. To do all such other acts, deeds and things as are incidental and conducive to the attainment of the above or any one of them.
h. Spread information about latest developments in the World of Down syndrome through our quarterly newsletter. Every member country contributes to the newsletter with information from their country which serves as a pointer for other countries in the region.

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What was Different this time?
A medical Committee Meeting was organized at the APDSF AGM this year with medical professionals from across the region participating in the event. The aim of the Medical Committee Meeting is to create guidelines for the Down syndrome community in the region, in the fields of Medical and Therapeutic support. Members from the medical fraternity as well as therapists are here to discuss the important aspects to be taken into consideration from the time a child is born with Down syndrome.

The medical committee meeting had been planned during our AGM in 2019. However due to the pandemic in 2020, the event got postponed for the next AGM. The pandemic however did not deter us from organizing our AGMs virtually. So in the year 2020 and 21, our AGMs took place over Zoom. All countries participated in the zoom and we were able to come up with concrete plans to help persons with Down syndrome across the region.

This medical committee meeting was chaired by Dr. Bhavani Sriram who is a doctor from Singapore and one of the Vice Presidents of the APDSF. She works in the field of Medical support for persons with Intellectual Disabilities. The medical committee was able to come with 3 major areas where we could guide and support persons with Down syndrome. This included:

1. Redefining the Health Passport by countries using it in a test group of at least 30-40 people
2. Guidelines for persons with Down syndrome. A very elaborate one not possible since it would be country specific, so a basic structure t be created in discussion with the medical committee members.
3. Post Natal Counselling to be standardized.

APDSF AGM
The AGM was organized on the second day – 4th of December 2022. The roadmap for the year 2023-26 was discussed and decided upon in consultation with all the members. The advisor of APDSF – Mr. Paul Zanon gave a concrete roadmap to help APDSF evolve as a bigger, more supportive body for the countries in the region.

The APDSF AGM resulted in the following resolutions being made
1. APDSF will ensure a Zoom meeting once in 4 months, apart from the AGM
2. APDSF will promote information sharing over social media.
3. Countries will bring in neighboring countries into the APDSF fold so that APDSF as an organization can support the other countries in the region.
4. The APDSF office in Chennai will be raising funds for the following activities of the APDSF
a. Research programs
b. Medical committee
c. Support activities

The AGM came to a close with the various countries willing to progress by ensuring immediate responses and reaching out to neighbors to guide and support them in their activities to help persons with Down syndrome.
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