“Building our Future” – Conference to be held at United Nations on 21 March 2012

The first United Nations observed World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in New York, USA, on 21 March 2012 (3/21), with the Conference “Building Our Future”.
Inclusive education, human rights, political participation, changing society attitudes, independent living, how to work with the media and research are some of the topics that will be discussed.

See below the current programme:

World Down Syndrome Day at the UN – 3/21 – “Building Our Future” Conference Room 2 – United Nations Headquarters – New York, USA – 10.00 to 14:30

10.00 to 10:30 – Opening
Welcome and Introductions Penny Robertson OAM, Chair of Board, Down Syndrome International (DSi)
UN Secretary General Ban-Ki Moon – Message on WDSD (to be confirmed)

Head of Brazilian and Polish Missions
Co-sponsor Organisations
10:30 to 11.00 – UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Effort to Socialize the Convention
Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF
Penny Robertson – Promoting inclusion in schools in Indonesia
Shona Robertson – Australia – Self-advocate – on her education experience
Beatriz Paiva – Brazil – Self-advocate – Carpe Diem Association – Co-author of book on communication accessibility

11.00 to 11:30 – Human Rights and Political Participation of Self-Advocates
Daniela Bas – Director of Division for Social Policy and Development (DESA), UN
Maria Alejandra Villanueva Contreras- Peru – Self-advocate – Fighting for her right to vote
David Egan – USA – Self-advocate – Lobbying for his rights at the US Congress
Ester Nadal Tarrago – Spain – Self-advocate who participated on book on the Convention

11:30 to 12:30 – Changing Society Attitudes – From Neglect and Institutionalization to Protagonist and Living in the Community
Rose Mordi – Nigeria – President of Down Syndrome Foundation Nigeria
K.S. Sripathi – India – State Chief Information Commissioner, Tamil Nadu Government, Down Syndrome Association of Tamil Nadu
Jason Kingsley – USA – Self-advocate, Co-author of book “Count Us In: Growing Up With Down Syndrome”
Emily Perl Kingsley – USA – Mother, writer, activist, author of “Welcome to Holland”
Tom Forester – USA – Director of Residential Services – Association for Children with Down Syndrome (ACDS), Long Island, NY
Michael Brennan – USA – ACDS Group Home Resident

12:30 to 13:00 – The Power of Media – A Guide to Work with the Media to Promote Inclusion
Michelle Whitten – USA – Global Down Syndrome Foundation – How to get media’s attention in a positive, constructive way
Patricia Almeida – Brazil – MetaSocial Institute – Brazil’s experience with WDSD and inclusive actions in collaboration with the Media
Tatiana Heiderich – Brazil/Holland – Self-advocate on her experience as a TV reporter

13:00 to 14:00 – Care, Treatment and Research – What’s new on the DS front
Dr. Jose Florez – Director, Mass General Hospital Down Syndrome Clinic; Director, NDSC; Clinical Advisory Board, NDSS
Dr. Brian Chicoine – Medical Director, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Dennis McGuire – Director of Psychosocial Services, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Edward McCabe – Executive Director, Linda Crnic Institute for Down Syndrome
Margie Doyle – Down Syndrome Research and Treatment Foundation (DSRTF) – Latest on research and how to help studies move faster

14:00h to 14.30 – Launch:
1) DSi 2012 WDSD Global Video Event
2) New WDSD Website
3) DSi UN Convention Global Outreach Programme
4) Book “Change the way you speak and I will change my way of
understanding”- By Carolina Yuki Fijihira, Ana Beatriz Pierre Paiva, Beatriz Ananias Giordano, Carolina de Vecchio Maia, Carolina Reis Costa Golebski, Claudio Aleoni Arruda, Thiago Rodrigues, from Carpe Diem Association, Brazil.
5) Book “The United Nations International Convention on the Rights of Persons with Disabilities commented by its Protagonists” – By Down España http://www.inclusion-international.org/wp-content/uploads/Guia-Convencin…

14:30 – Closing

The event is sponsored by the Missions of Brazil and Poland to the UN and organised by Down Syndrome International with the collaboration of the Brazilian Federation of Associations of Down Syndrome (FBASD), Down España, Down Syndrome Research and Treatment Foundation (DSRTF), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), Special Olympics and the UN Secretariat for the Convention on the Rights of Persons with Disabilities.

Registration
Participants from all around the world are welcome, especially those with Down syndrome.
There is no cost for registration. Confirmation to attend the event can be made by the email to undsconference@gmail.com.
Please inform name, email, age, nationality, relation to Down syndrome (self, parent, relative, professional, teacher, student, friend or other-specify), document number (passport, driver’s license, student´s ID), whether you have a disability and what kind and if you need a disability-related accommodation or service.
Only participants with their names on the list and an ID will be allowed in the building. Space is limited.

About Down syndrome
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues.

About World Down Syndrome Day
World Down Syndrome Day (WDSD) was established by Down Syndrome International in 2006 and has been observed in over 60 countries worldwide to date. It is held on 21 March (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes the genetic condition.
The aim of the day is to raise awareness and understanding about Down syndrome, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.

A resolution to designate 21/3 as “World Down Syndrome Day”, to be observed every year beginning in 2012, was adopted by consensus by the United Nations General Assembly in December 2011. The resolution was proposed and promoted by Brazil, and co-sponsored by 78 UN Member States. From 2012 onwards, the date will be celebrated by all 192 UN countries. To learn more about the resolution process at the UN, visit http://www.ds-int.org/news/1769.

For further information on World Down Syndrome Day (WDSD)
please visit the DSi website
www.ds-int.org or
the WDSD website www.worlddownsyndromeday.org

Press Contact:
Andrew Boys –
Tel: 0044 (0)20 8614 5124
Mob: 0044 (0)7810 153294
Email: contact@ds-int.org
Down Syndrome International -
Langdon Down Centre,
2A Langdon Park, Teddington,
Middlesex, United Kingdom, TW11 9PS.
Website: www.ds-int.org

Editors Notes:

•Down Syndrome International (DSi) is a UK based international charity, comprising a membership of individuals and organisations from all over the world, committed to ensuring quality of life and human rights for all people with Down syndrome. Our members include people with Down syndrome, parents, family members and friends, carers, professionals, practitioners, researchers, organisations and people who are interested in Down syndrome.

•World Down Syndrome Day is a global awareness day observed on 21 March each year. This date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome, and people and organisations worldwide celebrate on this day in a variety of different ways.

•Down syndrome is a life-long genetic condition from conception. All people with Down syndrome will have some degree of learning disability but many will go on to lead full and semi-independent lives.

•There is estimated to be up to 7 million people who have Down syndrome living worldwide.
Please refer to attached Guidance Notes regarding use of terminology.

Regards
Andrew Boys
Director
Down Syndrome International

DSFN celebrates World Down Syndrome Day (March 21st)

Press Release 6th March 2012
DSFN celebrates World Down Syndrome Day (March 21st)

The Down Syndrome Foundation Nigeria (DSFN), a registered charity established within the country to cater for people with Down Syndrome, announces the World Down Syndrome Day (WDSD) which comes up on March 21st 2012 will be celebrated in Nigeria just as it is being held all over the world.
What makes this year’s event very unique is that this is the first time the WDSD will be celebrated officially around the world after having been officially recognized by the United Nations (UN).

The first United Nations observed World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in New York, USA, on 21 March 2012, with the Conference “Building Our Future”.
The World Down Syndrome Day (WDSD) is usually celebrated on 21 March with Down syndrome organizations throughout the world organizing and participating in events to raise public awareness of Down syndrome.
According to the National President of the Foundation, Mrs. Rose Mordi, special activities have been lined up globally and locally to mark the day specially dedicated to people with Down syndrome worldwide and the foundation happens to be participating in all the activities including the special conference which will be held at the UN Headquarters in New York, with the UN Secretary General, Mr. Ban Ki Moon presiding.

The Down Syndrome Foundation is planning to make the World Down Syndrome Day (WDSD) the best celebration ever as it will be the first officially recognized WDSD in history as recognized by the United Nations. Already, the celebration would commence on the 7th of March with the celebration of the annual Inter-House sporting activities which will showcase the strength of the members in sports. There would be different kinds of sporting activities like sprints, long jump, egg racing and other fun sports.
The next activity that would follow the inter-house sports is a highly explosive comedy show entitled Comedy Infusion II for Children with Down syndrome coming up on Sunday, March 18th, 2012 at the Golden Tulip Hotel, Amuwo Odofin, Lagos State.

The show which is in its second season is being put together by Meljesten PR and Events in conjunction with E-Smith Events will feature a selection of star-studded comedians and celebrities like Alibaba, Teju Babaface, Basket Mouth, Emeka Smith, Yaw, Julius Agwu, Gbenga Adeyinka, AY, Gordons, Klint Da Drunk and Korede Bello. Others include Seyi Law,Elenu, Shakara and with music entertainment coming from KC Brown, Buzopat, Solid Star, and Ara.

The Special Guest of Honour is Mr. Tonye Cole of Sahara Group while Her Excellency, Mrs. Joke Adefulurie, the Deputy Governor of Lagos State is the Mother of the Day. Tickets for the show are on sales on major eateries across Lagos State and also at the DSFN Resource centre located at 43, Adegoke Street, Surulere Lagos. On March 21st, the foundation will be represented at the official WDSD that will be observed at the UN Headquarters, New York. According to Mordi, DSFN have been listed to deliver a paper at the celebration.
“It is my pleasure to inform you that DSFN will be part of the celebration in the first official celebration of March 21st as the WDSD at the UN and series of lectures are to be delivered by several organizations for people with Down syndrome across the world. I will be one of the persons giving a speech come March 21 this year,” she announced.

The National President will be speaking alongside Penny Robertson OAM, Chair of Board, Down Syndrome International (DSi) (UK), Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF, Penny Robertson from Indonesia, Australian – Self-advocate, Shona Robertson and Beatriz Paiva from Brazil among many others.

Mordi will deliver on the topic, Changing Society Attitudes – From Neglect and Institutionalization to Protagonist and Living in the Community, while the Foundation plans a picnic for children with Down syndrome, families and friends and a courtesy visit to dignitaries to raise the awareness of the rights of people with DS.

The foundation wishes to say that the goal of the WDSD is to raise awareness for the Rights and Dignity of People with Down syndrome and to celebrate people with DS and help them actualize their potentials and live a fulfilled life.

Down Syndrome Foundation Nigeria Wins International Award on World Down Syndrome Day.

Down Syndrome Foundation Nigeria Wins International Award on World Down Syndrome Day.

By Ahaoma kanu

The Down Syndrome Foundation Nigeria (DSFN), the charity that takes care of people with Down Syndrome in Nigeria and the west coast joins all other Down Syndrome organizations all over the world in celebration of the World Down Syndrome Day (WDSD) which is officially marked on March 21st of every year.

The World Down Syndrome Day-WDSD is a global event supported by all Down syndrome groups worldwide and we at DSFN use this period to focus our efforts in Advocacy, Awareness and interactive and educative partnerships to overcome the prejudices of people living with Down syndrome.

The foundation had series of activities to commemorate the event which included an inter-house sports, a comedy show entitled Comedy Infusion which was celebrated yesterday at The Incubator, Ligali Ayorinde Street, Victoria Island, opposite RCCG Church (City of David) Lagos. The event witnessed top comedians like Emeka Smeth, Teju Babyface, Klint Da Drunk, Funky Mallam, AY, Seyi Law, Elenu and Shakara. Music entertainment came from Ice Prince, Buzopat, W4, Ray 9 and Ara. The event was packaged by Meljenstin PR & Events, E-Smith and Down Syndrome Foundation Nigeria. An Open House event which will feature several activities will cap the celebration.

Also, the foundation is one of the recipients of the 2011 World Down Syndrome Day Awards courtesy of the Down Syndrome International (DSi) based in the United Kingdom but comprising a membership of individuals and organisations from all over the World, committed to ensuring quality of life and human rights for all people with Down syndrome .

The announcement was made today and the foundation won in the award in the Outstanding Professional Categories for organisations that have affected people with Down Syndrome in the world.

Speaking delightedly about the award, the National President of the foundation, Mrs. Rose Mordi said the foundation was grateful and really encouraged by the award.

“Honestly, I must say that we are surprised by this honour and we dedicate the award to God Almighty for given us the strength to be doing what we are doing and also to our members, volunteers and well wishers,” she said.

The foundation was the only African country to receive the award this year which is the second edition of the awards.

According to the Mr. Andrew Boys, Director of DSI, a formal presentation formal presentation of World Down Syndrome Day Awards for the years 2010-2012 will take place at the 11th World Down Syndrome Congress (WDSC) in Cape Town, South Africa from 15-17 August 2012.

Below is the Press Release published by DSi and can be viewed at the link http://www.ds-int.org/news/1666

PRESS RELEASE

For immediate release on Monday 21 March 2011

DOWN SYNDROME INTERNATIONAL ANNOUNCES RECIPIENTS OF 2011 WORLD DOWN SYNDROME DAY AWARDS

On Monday 21 March 2011, World Down Syndrome Day, Down Syndrome International (DSi) is delighted to announce the recipients of the 2011 World Down Syndrome Day Awards.

2011 is the second year of the World Down Syndrome Day Awards, presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

This year’s recipients are as follows:

Voluntary and Professional Awards

4 individuals with Down syndrome receive awards for outstanding self-advocacy:

Ty Belnap (Australia) – Record breaking swimmer, surf lifeguard and stage and movie actor.

Mia Farah (Lebanon) – Self-advocate and international disability rights campaigner.

Malgorzata Jablonska (Poland) – Stage and movie actress, performing in many European countries.

Sujeet Desai (USA) – Accomplished musician and self-advocate with worldwide reputation.

3 individuals receive awards for outstanding professional activities:

Dr Branka Butorac (Croatia) – Headmaster of Down Syndrom Centar Pula, Croatia.

Driton Bajraktari (Kosovo) – Co-Founder and Executive Director of Down Syndrome Kosova, Kosovo.

Pauline L`vovna Zhiyanova (Russia) – Special Education Teacher, Downside Up, Russia.

4 organisations receive awards for outstanding professional activities:

Ikatan Sindroma Down Indonesia (ISDI) (Indonesia) – Down syndrome support and advocacy group.

Yaldei Tismonet Down (YATED) (Israel) – Down syndrome parent support organisation.

Down Syndrome Foundation Nigeria (Nigeria) – Centre for children and adults with Down syndrome.

Robert Owen Communities (UK) – Charity supporting over 350 adults with learning disabilities.

2 individuals receive awards for outstanding volunteer activities:

Agnieszka and Zofia Aleksandra Tucholska (Poland) – Young sisters with volunteering experience assisting people with Down syndrome and other learning disabilities.

1 individual receives an award for an outstanding contribution to raising awareness of Down syndrome:

Casper Lja (Canada) – 23 year old man who cycled 7,444 kilometres across Canada to raise awareness and money for Down syndrome advocacy.

Scientific Awards

1 individual receives an award for outstanding contribution as a medical professional in the field of Down syndrome:

Dr S Suresh (India) – Co-Founder and Chief Medical Director, MediScan Systems, Chennai, India.

President’s Special Recognition Award

2 individuals receive special awards for lifetime achievement in Down syndrome advocacy:

Penny Robertson OAM (Australia) – Pioneer of Down syndrome advocacy in Australia, Founder of Australian International School, Indonesia and Co-Founder of Down Syndrome International.

Dr Balbir Singh PBM (Singapore) – Founding Chairman of Down Syndrome Association Singapore, pioneer of World Down Syndrome Day programme and Social Service and Disability sector advocate.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards for the years 2010-2012 taking place at the 11th World Down Syndrome Congress (WDSC) in Cape Town, South Africa from 15-17 August 2012.

-END-

For further information on the recipients of the 2011 World Down Syndrome Day Awards or to learn more about World Down Syndrome Day (WDSD), please visit the DSi website www.ds-int.org or the WDSD website www.worlddownsyndromeday.org. For further information on the WDSC please visit the website www.wdsc2012.org.za.

–
AHAOMA KANU
MEDIA AND PUBLICITY COORDINATOR
DOWN SYNDROME FOUNDATION NIGERIA
43, ADEGOKE STREET
OFF MASHA ROAD, SURULERE
LAGOS STATE
NIGERIA
Email: a.kanu@dsanigeria.org
Website: www.dsanigeria.org
Tel:: +234-80-3748-7286

PRESS RELEASE : World Down Syndrome day March 2011

World Down Syndrome Day
Come Monday, March 21, 2011, the Down Syndrome Foundation Nigeria DSFN, joins the world to celebrate the World Down Syndrome Day-WDSD. This is a global event supported by all Down syndrome groups worldwide and we at DSFN use this period to focus our efforts in Advocacy, Awareness and interactive and educative partnerships to overcome the prejudices of people living with Down syndrome.

The Down Syndrome International (DSI) adopted March 21^st to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21^st chromosome and is used synonymously with Down syndrome. The inaugural WDSD was held on 21 March 2006 in Singapore.

Our activities for this year’s WDSD events include an Inter House Sports Competition, Comedy Infusion and an Open House on March 21, 2011.

The INTER HOUSE SPORTS competition is slated for Wednesday, March 9, 2011 at the Sam Shonibare Community Centre, Off Ajao Road, Surulere, Lagos under the distinguished Chairmanship of Mr. Tonye Cole, Managing Director, Sahara Oil and Gas Limited. The Special Guest is the Lagos State Commissioner for Women and Poverty Alleviation, Mrs. Joke Orelope-Adefulire. The Father of the Day is Mr. William Pope, Principal, Grange School, while Mrs. Stella Nwankalor is the Mother of the day.  The event starts at noon.

The COMEDY INFUSION comes up on Sunday, March 20^th, 2011 at The Incubator, Ligali Ayorinde Street, Victoria Island, opposite RCCG Church (City of David) Lagos.

Participating comedians include Basketmouth, Julius Agwu, Gbenga Adeyinka d 1^st, Funky Mallam, AY, Gordons, Klint Da Drunk and Teju Babyface. Others are Seyi Law, Emeka Smith, CD, John, Elenu, Shakara. Music entertainment coming from Ice Prince, Buzopat, W4, Ray 9, Obiwon, Whiz Kid, MI, Liza and Jay One.

Guest appearance by Ali Baba and Master of Ceremony is Desmond Elliot.

Her Excellency, Mrs. Sarah Sosan, Deputy-Governor of Lagos State is the Special Guest of Honour and Mother of the Day is First Lady, Lagos State, Mrs. Abimbola Fashola.

The event starts at 5 pm. Tickets –Regular- N1, 500, VIP- N5,000 and V-VIP- N10,000- are available in all Tastee Fried Chicken outlets  Festac, V/I, Opebi, Ikoyi, Agege, Surulere, Marina, Omole, Ikorodu.

There are tables of 10 – N200, 000 and a table of 5 – N100, 000.

This event is been packaged by Meljenstin PR & Events, E-Smith and Down Syndrome Foundation Nigeria.

The WDSD- OPEN HOUSE is on Monday, March 21^st, 2011 at the DSFN Resource Centre at 43, Adegoke Street Surulere. Time is 11 am prompt. The open house will feature several activities.

Let’s Show Them LOVE!

Hope Rises for People with Down Syndrome as Foundation is Launched

It was double celebration for people with Down Syndrome on Children’s Day Celebration last week as they marked the launching of the Down Syndrome Foundation Nigeria (DSFN)and also had their new resource centre commissioned.

During the event which held at the Foundations resource centre located at Adegoke Street in Surulere, Lagos State, the First Lady of Lagos State, Her Excellency, Mrs. Abimbola Fashola   extolled the dedication and determination of initiators of the Down Syndrome Foundation Nigeria, notwithstanding the enormous difficulties caregivers to children afflicted with such challenges pose. Speaking at the event,  Mrs.Fashola, who was represented by her Senior  Special Assistant, Mr.Biodun Ogunyade, said she will be willing to assist the Foundation, to ensure the Children are properly catered for.

“ She asked me to say thank you, thank you, for a job well done,” he said and also  on Corporate Nigeria, and other well meaning Persons to show concern and support for the Children and the Foundation.

He went on to announce that   Ministry has concluded plans start a TV show, a Social Welfare Hour, to showcase the works of charities that help special people and promised that children with Down syndrome  and the activities of the Foundation will be given priority. He urged the larger society to show love and care to kids, who are so challenged, rather than stigmatizing and discriminating against them.

President and Founder of the Down Syndrome Foundation, Mrs. Rose Mordi has stressed the need for Parents with  DS condition children  not to regard it as a curse as the children could be helped to live a fruitful and productive life if given the necessary assistance. Mordi made the call as the members of the Board of Trustees of the foundation were inducted.    Speaking to journalists, Mordi urged parents with children with the Down syndrome not to stigmatize or discriminate against them but should rather seek help.

“I have a child born with this condition- a young lady of 23 years old. And I realized that in Nigeria, there is not much information about the condition, and you know that any thing that is not well known, people become superstitious about, so I decided to create awareness, by gathering a few parents together, and we started as a parent support group. From there we got involved in helping the children,” she said.

On what causes Down syndrome,  Mordi  explained that the condition is a genetic imbalance.

‘Down syndrome is a genetic disorder- that happens at conception. A child born with Down syndrome (DS) has an extra chromosome. You and I have the regular number of chromosomes in our cells- that is 46; we get 23 a piece from both parents but a child who is to be born with Down syndrome has an extra chromosome which we refer to as an accident of birth. It is not due to anything the mother did, or didn’t do, or the father did or didn’t do .It is spontaneous thing that happens, it is the 47th chromosomes, as against, the forty-six they should  and that extra chromosome is what   predisposes a child to this condition,” she explained.

She decried the practice where families with a DS child would rather want to lock the child up than seek for assistance in administering early intervention. She informed that one of the challenges facing the foundation was the non-challant attitude of the general society.

“Because, as it not a very flamboyant project, a lot of people don’t want to even partner with us, to help these children. The main problem, we experience is the nonchalant attitude of the larger society –to help these children and their family. We have a lot of children we need to support, medically and educationally, but we haven’t got the wherewithal to do that. And, we don’t have much support, and it has been a very big challenge to us,” she said.

Similarly, a Trustee of the Foundation, and Nigeria’s former Ambassador to Ethiopia, Ambassador Segun Olusola,  called on well meaning  Nigerians who have job openings in their establishment not to hesitate to engage, and help children with this condition as they up, in order to give a sense of belonging, that they are wanted, that they have things they can do to help other peopled.

Ruben Abati, also a Trustee of the Foundation, frowned at the attitude of government at all levels toward the welfare of the Nigerian child. The social crusader and the Editorail Board Chairman of the Guardian Newspaper frowned at what he described as the government paying lip service to helping the Nigeria child.

“Governments at all levels pay lip service to doing something for the Nigerian Child. But in reality not enough is done, not real commitment is shown, and what is done is nothing but mere lip service. It is not all about children who have Down syndrome; it is about children generally, in difficult circumstances. Children represent the future of this country. The population of Nigeria is predominately young. And our constitution says, nobody, should be discriminated against, either on the basis of religion or circumstance of birth, faith or for any reason whatsoever. For Government to neglect children in difficult circumstances, amounts to an abuse or a violation of their basic human right,” he said.

However, he gave a pat on the back for Her Excellency, for showing interest the activities of the DS Foundation.

“It gladdens my heart, that, today, we have Government representation, the Lagos State people, the Office of the First Lady of Lagos, and they were well represented. And, the appeal we will be making is that another government should show interest in what the DS Foundation is doing.

What the DS Foundation has been able to achieve is quite impressive. I think, it is a Foundation that deserves the support of government and also, of all a sundry. We run a society, whereby, the privileged do not seem to be public spirited, where the privileged seem to be interested only in conspicuous consumption, and continuous amassing of wealth.

Those chaps in the National Assembly, who are collecting millions of money per quarter. The House of Representative members, they are not even satisfied with 27. 2 million per quarter, which I think, it case of being over paid for doing nothing. They say, they now want about 50 million per quarter. Now, the question you ask is what they do with this money. I would like to see a situation, whereby the privileged in the Nigerian society, does not spend his wealth, either acquired illegally or legitimately, simply on showing of on endless patties, but feel concerned about the plight of other human persons’

The Children entertained the guests and audience with songs and dance. Their performance was so thrilling that Ambassador Segun Olusola has this to say, ‘I thank you for the performance of the kids. When, it comes to the issues, idea, a play, a song, dance, invite me, I will come and be with them.”

My Story – Rose Mordi & DSAN

“I was in my late thirties when I had my daughter, Awele Maria Mordi on 29^th July 1987; it was not an easy pregnancy for me. I was given all sorts of reasons why I could be feeling the way I did during the pregnancy. I was told it could be a boy or maybe I was carrying twins.”

Like she had feared that all was not well, she asked to see her baby when she regained consciousness. But she was not allowed to see the baby until the fourth day, and when she did, she became hysterical.
“They eventually brought my baby to me on the fourth day. I was having my siesta when they brought her and when I woke up and saw her, I screamed. I knew immediately that she had Down syndrome. I was familiar with the condition because in my previous ante-natal classes abroad, we had been taught about all these abnormalities. I called the attention of the nurse and she tried to reassure me that the baby was okay but I was not convinced.

Later on, they said they were going to carry out tests to determine the type of DS she had. (There are three types of DS – Trisomy 21, Mosaic and Translocation); the hospital also promised to get a physiotherapist to work on her neck which was very weak. Nothing was ever done by the hospital. In order to take care of the baby, I had to take a long leave of absence from work. It was during that period that I got in touch with the Down’s syndrome Association in the UK. I was given some counseling and resources. My daughter is the better for it today because I was able to do something early”.

In order to take care of her daughter, Awele, properly, she had to be constantly in touch with the UK DSA. Later on, she was advised to start a similar organisation in Nigeria to help families because there were lots of enquiries coming from Nigeria. She eventually did that  and the association was formally inaugurated on the 4th of December, 2001. She says the association started with a handful of parent members in her sitting room. The association has about 300 registered members with over 30 children coming in regularly.

She reveals that the establishment of the association became necessary because no such association previously existed in the whole of West Africa. The only one in Africa is in South Africa. She says that parents with children with the condition need to come out to learn how to manage their children’s condition. She also says that our society needs to be educated and awareness programme carried out to eliminate the stigma attached to the condition; such stigmatization is unnecessary and unjustified because these children thrive well on love and constructive affection.

“I recall that when I had my baby, people who saw her made all sorts of uncomplimentary remarks and suggestions. There is this belief that children with D.S. are snakes or demons and should be thrown away into a forest or a stream. I remember someone saying, ‘So you have this kind of baby; they are snakes!’ I just responded that if God in His infinite wisdom deemed it fit to give me a snake for a child, then I will take care of her as all living things were created by God. Such superstition is still rife because just a couple of years ago my sister’s friend nearly succumbed to it. She was asked to go and throw her DS baby in the stream. It was my sister who prevailed on her and enlightened her that her baby was not evil but a precious gift from God.”

Mrs. Mordi however, admits that running the association has been quite challenging; the greatest challenge has been funding. Being a charity, members are not expected to pay for services being rendered but costs are incurred on a daily basis to run the Resource centre.

“We render a number of services and we have various professionals employed to do this effectively. We have the Early Intervention programme (EIP), which is designed to ‘catch them young’, so that the condition is easier to manage as they grow older. Given their condition, they are predisposed to some other ailments. About 60-70% of people with DS have a heart condition that is why many of them die early. Diabetes, thyroid problems, Alzheimer’s and a generally low immune system are conditions associated with people born with DS. Thus they constantly require medical attention and we try to do that at the centre. We have volunteer medical professionals coming in to carry out checks but when there is need for major medical procedures, we find ourselves unable to handle such because of lack of funds.

“Due to their learning disability, we have professionals in that area. We carry out programmes on numeracy, literacy and vocational training. The programme is very much similar to the Montessori system whereby teaching each child is individually tailored towards the ability of the child. At this moment, we are unable to carry out effectively all the programme because we are constrained by space, structures and funds. It costs us approx. =N=600,000 monthly to run the centre. Most of our members are indigent; they cannot afford to pay for the services we render. We need a bus to convey the children because some of them cannot even afford transport money to come to the center.

Our aim is to see that children with DS are adequately taken care of so that they can develop their potentials optimally and be integrated into the society. My vision for the association is to have  proper structures in the six geo-political regions of Nigeria, which will incorporate a medical unit, a school/vocational centre, recreational/residential quarters and other necessary facilities.”

Talking about her own experience, Mrs Mordi says she has coped fairly well because of the knowledge that she has acquired over time about the condition. “My daughter got integrated into the family quite early and was brought up like her other sibling. She is fairly independent as she does everything by herself and is quite assertive. She cooks fairly well and is does shopping independently. She travels without a chaperone.”

Mrs Mordi advises other parents to bring their children out as they are capable of achieving a lot. In the developed countries, many of them are computer wizards and very talented , particularly in the arts. “A number of people with DS work at the UK DSA office and other parts of the developed countries. Thus the society needs to give them a chance to express themselves and fulfill their potentials.”
Mrs. Mordi also says that the association is a membership organization and anyone can join  as it is not restricted to families of people with DS. The association needs a lot of volunteers, supporters, patrons and people who wish to give scholarship to our indigent members.

People born with Down syndrome are predisposed to various medical conditions that require early intervention. In a country like Nigeria where provision of primary health care is almost non-existent, our association (in conjunction with our partners), aims to put up a functional medical unit  this year to take care of minor medical  needs of people with Down syndrome and other learning disabilities. In 2007, our association was able to sponsor two of our children to India for corrective heart surgery. This year, we intend to sponsor about three of the children on our waiting list for similar surgery overseas and also construct a well equipped resource centre with residential facilities.

Everyone can be of help by donating, volunteering or supporting the work of the association in one way or the other. The association has a functional website (www.dsanigeria.org/ email:info@dsanigeria.org). Donations could be made on-line or sent directly to the head office in Lagos.

A Blessing in Disguise! – Composed for David Akerele By Elsie Rose Akerele

My Angel Has down Syndrome

Yes! His Birth, unusual; his growth, unique;

His make, different.

At first a challenge, and later a task,

And then a mission.

My Angel Has Down Syndrome

I needed the grace, he needed the love.

His siblings were aware of the work on ground.

Their input is beyond what money could buy.

They needed to extend their unconditional acceptance

To the new arrival in the home of ours.

My Angel Has Down Syndrome

I learnt to make him my angel, my friend,

My companion and my closest acquaintance.

And I got the shock I never bargained for.

The way my Angel responded to training,

He yielded to love,

He embraced my friendship,

He was encouraged to learn some skills,

He dances like bees and drums better than the drummer boy,

He sings like birds and his laugh infectious.

My Angel Has Down Syndrome

And soon, my Angel was noticed by all and sundry

He began to be loved by the neighbours and authorities

His gifts and skills have made room for him.

He stands before kings and acts before princes.

To the priests, he is just the friend they want.

My Angel is humorous and so compassionate.

Is that a gift or also a skill?

You should know where I’m coming from!

We became friends and the best for sure.

My Angel Has Down Syndrome

Wherever he goes, I’m always invited

If he sees the kings, I’m seen kings

If he is beamed in the media, I am always accomplished.

We compliment each other in our great assignment.

My Angel Has Down Syndrome

His credentials include story telling,

Children supervision and interceding for people.

David my Angel, the weak has been made strong,

The Fool has become wise, the poor has become rich.

And today this scripture is here fulfilled:

“That all things work together for good to them that love God

And are called according to his purpose.”

My Resolve

I’ll love the more to gain twice as much

My mission in life is right on course.

My Angel is the catalyst of who I am,

And a great aid to where I am.

With David, I have learnt my lessons aright,

And place my priorities right as well.

When I’m left with the weak,

The Lord supplies the strength I need.

When I stay with the fool,

The Lord remains my wisdom.

When my portion is with the despised,

Christ remains my lifter.

My Angel has brought me from obscurity to limelight,

A royalty I never bargained for.

I share fame and glory with him;

I enjoy privileges with him.

He is now one of the greatest treasures

I have found in life.

He’s given my life a meaning

The greatest things God has done for me.

Who is Your Angel?

Locate him and the Lord will turn your pains to gains.

My angel has DOWN SYNDROME ;

Ayo Omotade visits DSAN

The first time I heard about the man called Ayo Omotade, I admired his courage; for standing up to restore the dignity of his fellow human being was not only courageous but religious considering the Parable of the Good Samaritan. Read more

Baby Victoria Ajayi Undergoes Successful Corrective Heart Surgery

by Ahaoma Kanu

Some hours after more than one billion people worldwide witnessed the historic swearing in of the 44th and first African-American President of the United States of America (U.S.A), Barrack Obama, a group known as the Down Syndrome Association of Nigeria (DSAN) kept vigil at night offering prayers and supplication to the same God not for the new President who had ten balls to attend thousands of miles in Washington, they were spiritually clearing the way for one of their babies who left the shores of the country to have her defective heart corrected. Read more

Organization of awareness campaigns

Down Syndrome Association of Nigeria since 2002 has sucessfully organised awareness campaigns to educate members of the society about our cause and use this as a meduim to reach out to those who are vunerable. Our awareness week usually takes place in the month of September. We thank all those who have played or contributed to make them a sucess so far; the journey is a long one and we admonish you to support us in any way you can.

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