“World Down Syndrome Day” is a global event organized to advocate the rights of people or children suffering from “Down Syndrome” and to send a message that they too can live a happy and normal life.
As early as 2005, agencies researching on Down Syndrome are organizing annual events on March 21 to raise awareness about those suffering from Down Syndrome and also the medical advancements made.
Recognizing the need to support people suffering from Down Syndrome, the WHO (world Health Organization) on 20th December 2007, recognized March 21st as “World Down Syndrome Day”.
Following the decision of WHO, the United Nations General Assembly also designated the same date as “World Down Syndrome Day” on 19th December 2011. Since 2012 “World Down Syndrome Day” has been observed annually on 21st March.
World Down Syndrome Day 2019 was celebrated on Thursday, 21st March 2019.
World Down Syndrome Day 2019 theme was “Leave no one behind”.
People across the nation observed the day by organizing various discussions, seminars, processions and talks on this genetic disorder which has affected a huge amount of population across the world.
Volunteers also conducted flash mobs in Indianapolis and Terre Haute to celebrate the people with Down Syndrome. The event was open to public and any one could take part in it. Many interviews with the successful people living with Down Syndrome were also conducted across the world.
Down Syndrome Federation of India organised a rally ahead of World Down Syndrome Day. People living with the Down Syndrome took part in the rally and an awareness drive was also conducted requesting masses to help the people with Down Syndrome to live their life with respect and dignity and to not show any kind of discrimination towards them.
People wore mismatched socks and shared their pictures and videos on the social media to attract the attention of the people for the World Down Syndrome Day. The campaign was shared with the hash tag #RockYourSocks. It was aimed to raise awareness on this genetic disorder which occurs due to an extra copy of chromosome which looks like socks.
World Down Syndrome Day 2019 theme is – “Leave No One Behind”.
What is Down Syndrome (Trisomy 21)?
Down Syndrome is a genetic disorder causing a delayed physical and mental growth in individuals. Children or adults suffering from Down Syndrome have lower IQ and learning ability along with characteristic facial features. A young adult with Down Syndrome has an average IQ of 50; equivalent to that of a normal 9 years old child.
Down Syndrome is caused due to the presence of a part or full of a third copy of chromosome 21 in DNA. Normal people have only two copies of Chromosome 21. It is named after the British doctor John Langdon Down who fully described the syndrome in 1866.
The occurrence of an extra chromosome in the child of otherwise normal parents, is believed to be purely a matter of chance with no external factor contributing to its occurrence.
Down Syndrome is an incurable disease, but the quality of life of those suffering could be considerably improved by giving proper medical support and education.
History of World Down Syndrome
In 1990 AFRT, the French Association for Research on Trisomy 21 was formed to support the research and medical advancements in the field of Down Syndrome.
In 2005, AFRT decided to dedicate 21st March to the cause of Down Syndrome. The same year a meeting was called in by the AFRT at Paris on March 21 on the theme “From Patient to Research, Better Understand to Better Help”.
The first proposal to observe March 21 as symbolic date of International Day For Down Syndrome was made by AFRT in June 2005, at a meeting on Down Syndrome organized by EDSA (European Down Syndrome Association) at Palma of Majorca in Spain. Thus March 21 was adopted as the symbolic date of International Day for Down Syndrome, by both EDSA and DSI (Down Syndrome International) Boards.
The first events on Down Syndrome were organized on 21st March 2006 at Geneva and at Paris; following the suggestions of a Medical School Professor from the University of Geneva – Stylianos E. Antonarakis. The events coincided with the Paris meeting on Down Syndrome on 21st March 2006.
The symbolic date of Down Syndrome – 21st March got a global recognition when WHO declared it as the “World Down Syndrome Day” on 20th December 2007. Further developments came when the United Nations General Assembly also recognized March 21 as “World Down Syndrome Day” on 19th December 2011 in its resolution number 66/149.
Since then World Down Syndrome Day has become a global event, advocating the rights and providing support to those suffering from Down Syndrome (Trisomy 21).
World Down Syndrome Day is celebrated for the cause of Down Syndrome and to advocate the rights of as well as to provide emotional and medical support to the children and adults suffering from Down Syndrome.
Unfortunately there is no cure for Down Syndrome and a child born with Down Syndrome needs proper medical attention throughout his life, to lead a happy and fruitful living. However, with proper education and medical facilities their quality of life could be considerably improved.
It is one of the most common chromosome abnormalities in humans, with a 0.1% (1 in 1000) probability of a child being born with Down Syndrome.
In the 1990s the Down Syndrome has caused around 43000 deaths. Unfortunately due to the efforts from organizations like AFRT, EDSA and WHO the deaths were down to 27000 in 2015.
Children suffering with Down Syndrome need special classes and specialized institutions. When provided appropriate care these people/children have graduated and also working and getting paid in some capacity.
Though there is no exact data on the number of Trisomy patients worldwide, but the condition has a global presence with reported cases in at least 70 countries. There are an estimated quarter million families in United States alone, those are suffering from Down syndrome.
Thus the “World Down Syndrome Day” is celebrated to raise the public awareness of Down Syndrome and to provide educational, psychological, medical or emotional support to those suffering from it.
In its resolution designating March 21 as the “World Down Syndrome Day” the United Nations General Assembly has called upon all the Member states, civil societies and relevant organizations to extend their support in raising awareness for Down Syndrome. Since then the day is celebrated by many individuals and organizations throughout the world, who are interested in extending their support to the children or adults suffering from Down Syndrome.
The AFRT (French Association for Research on Trisomy 21) organizes a meeting on the “World Syndrome Day”, which is attended by other similar organizations like EDSA (European Down Syndrome Association), DSI (Down Syndrome International), WHO (world Health Organization) and the UN. Many doctors, scientists and people from the civil society are also present.
Persons suffering from Down Syndrome are supported in expressing their opinions and requesting United Nations and other relevant organizations to work for their betterment, providing appropriate educational, medical and other supports.
Varieties of events are organized globally, including the 70 countries with persons suffering from Down Syndrome. The events include debates, talks, lectures, shows etc with an objective to raise awareness for Down Syndrome and the ways by which the quality of life of those suffering from it could be raised.
People wear different kinds of accessories – wrist bands, t shirts, socks etc to express their concern and solidarity towards those suffering from Down Syndrome.
People and relevant organizations also promote “World Down Syndrome Day” through social media, often using a variety of hash tags like – #downsyndrome, #worlddownsyndromeday etc.
World Down Syndrome Day Socks – 2018
World Down Syndrome Day 2018 was celebrated on Wednesday 21st March 2018 with the theme “what I Bring to My Community”. The theme was aimed at encouraging the people with Down Syndrome to tell about their contribution to the community.
Once again the concern was raised for the Down Syndrome patients across the world and their rights advocated. People connected globally through social media and various events organized throughout the globe.
World Down Syndrome Day conference was organized at United Nations Head Quarter in New York and a side event to Human Rights council was held at United Nations in Geneva.
The centre of attraction had been the #lotsofsocks campaign and millions around the globe wore colorful socks to show their support to the people suffering from Down Syndrome. Many people posted their photos on social media wearing colorful socks, T shirts, tags etc.
Various events like – obstacle races, bike rides etc are organized to raise awareness and funds for the people suffering from Down Syndrome.
World Down Syndrome Day 2019 Events
World Down Syndrome Day 2019 will be celebrated around the central theme – “Leave No One Behind”. A grand event will be organized at United Nations in Geneva by Down Syndrome International (DSI).
The overall objective of the event will be to increase dialogue between those suffering from Down Syndrome or their supporters and the governments or relevant organizations working for the cause.
All the stakeholders working for the cause of Down Syndrome will be encouraged to make necessary changes or to adopt new policies to bring change into the lives of those suffering from Down Syndrome.
A variety of participants will be present for the events – bureaucrats, professionals, doctors, scientists, UN Officials, representatives of NGOs etc. Efforts are also being made to invite participants from different parts of the world.
A preparatory workshop for persons with Down syndrome will be organized, followed by and open discussion on Down Syndrome and how to raise awareness and arrive at a feasible plan of action.
This year also the #lotsofsocks campaign will be organized with people wearing brightly colored socks to show their support to the persons with Down Syndrome and draw the attention of Governments and other relevant agencies.
The “World Down Syndrome Day” is not observed as a holiday by any government or private organization; still, there could be innumerable ways by which you can extend your support to the people suffering from Down Syndrome and those who fight for them.
Some of the things to do on “World Down Syndrome Day” are given below –
1) Gather Information
The first and most important thing is to gather every information about Down Syndrome. Like its causes and symptoms, also gather information about various government and non government organizations working for the persons with Down Syndrome. Gather as much relevant information as you can about Down Syndrome, as it will help you to get an insight into the plight of those suffering from Down Syndrome and is also to raise awareness for them.
2) Reach Out
Try to reach out to people in your community informing them about “World Down Syndrome Day” and garnering their support. Tell them to extend their support to persons suffering from Down Sydrome and initiate a change; informing them about the ways in which they could do the same. Collect information about children, adults with Down Syndrome in your community and extend your support and solidarity to their families. You can work as a liaison between those in need and those who work for them.
3) Support Campaign
Support the campaign for “World Down Syndrome Day” in whatever way possible. Even if you can’t be physically present at the events you can still extend your support for the campaigns on social media. You can join many hash tag campaigns like #worlddownsydromeday, #seetheability, #lotsofsocks and #WSD19 etc. Post your picture on social media wearing socks, t shirt or other accessories to support the campaigns and express your concern for the people with Down Sydrome.
4) Watch The Development
Closely watch the developments around the world on the day. Keep yourself informed about the latest news, events, announcements made on the day. Closely watch the proceedings at United Nations Geneva and United Nations Head Quarter at New York. Also gather information about the events in other parts of world and how the people are celebrating them.
5) Share Information
Share the information that you have got about Down Syndrome and the people who suffer from it. Spread the word and raise awareness about the subject. Sharing the information is the best way to spread awareness and bringing more people in support of “World Down Syndrome Day”. The more information you share the more people will recognize the need to support the campaigns and acknowledge the efforts of relevant agencies.
6) Volunteer
If you could give your time, then volunteer at an event or campaign organized by Non Government Organizations or other agencies working to support people with Down Syndrome. You could volunteer in a fund raising campaign, debate or other relevant events. You can also volunteer with many medical agencies working to provide medical support or an educational institute which specializes in teaching the children suffering from Down Syndrome.
7) Donate
If you don’t have time to volunteer then donate. However small the donation might be, it will be worth it as it is used to help someone suffering from Down Syndrome. Even a single Dollar/Rupee donated by you could be spend on the education of a Down Syndrome child or could be spend on providing self employment to an adult with similar medical condition. Remember that every Dollar/Rupee counts and might be the cause of changing a life.
8) Take The Pledge
Take the pledge to support the campaigns and also to support the people suffering from Down Syndrome. Also ask your family and friend to take the pledge with you. The pledge must not have any time boundation and you must be willing to extend your support to the cause, throughout the year.