World Down Syndrome Day at the UN - 3/21 - "Building our Future" - Conference

PRESS RELEASE - World Down Syndrome Day at the UN - 3/21 - "Building our Future" - Conference to be held at United Nations on 21 March 2012 - Down Syndrome International, 17 February 2012


Fri, 2012-02-17

PRESS RELEASE - FOR IMMEDIATE RELEASE ON FRIDAY 17 FEBRUARY 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 - My Life...My Education.

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

   

Free webinar

 Joan Guthrie Medlen, Med, RD, is offering a FREE webinar Saturday, January 14th, 10AM (PST). Joan, a parent of an adult with multiple disabil-ities, offers a way of han-dling the many facets of life in a way to work on
health promotion as well as all those other pieces of life, without adding stress. To access Joan’s webinar on Jan. 14th, go to

http://2012vision.eventbrite.com/.

UN Gives Nod To World Down Syndrome Day

The United Nations is on track to officially recognize an annual World Down Syndrome Day starting in 2012.
A resolution to establish the awareness day on March 21 of each year cleared a U.N. committee by consensus last week. Officials say it will be adopted by the international body’s General Assembly in December.
The United States is one of 78 countries supporting the effort, which is spearheaded by Brazil.
Supporters said the date — March 21, or 3/21 — is significant because Down syndrome occurs when a person has three copies of the 21st chromosome.
Advocates from around the world have honored Down syndrome awareness on March 21 for the last six years. Earlier this fall, more than 12,000 people signed a petition to request U.N. recognition in an effort to bring extra meaning to the day.
Per the resolution, member nations and private groups would be asked to promote Down syndrome awareness on the special day.
A similar U.N.-sanctioned day already exists to honor autism. In 2007, the international body named April 2 World Autism Awareness Day.

Yoga for persons with Downsyndrome

Down syndrome is a congenital disability with an overall incidence of one in every 700 births. The incidence of Down syndrome in children born to 25 year old mothers is approximately 1 in 1200; the risk increases to approximately 1 in 350 for 35 year olds and approximately 1 in 120 for women older than 40 years. The chromosomal abnormality involved in most cases of Down syndrome is trisomy 21. As a result, the affected person has 47 chromosomes in all body cells, instead of the normal 46.

Persons with Down syndrome are shorter than average, with truncated limbs. Some other common characteristics of Down syndrome include an epicanthic fold of skin extending from the eyelid over the inner canthus of the eye, strabismus (crossed eyes) and hypotonia (low muscle tone). Motor development is slow; and instead of walking by 12 to 14 months as most children do, children with Down syndrome usually learn to walk between 15 to 36 months. Language and cognitive development are also significantly delayed. The majority of children with Down syndrome function in the mild to moderate range of mental retardation. In addition to these delays, children with Down syndrome are also susceptible to certain medical problems, including: congenital heart defects; increased susceptibility to infection; respiratory problems; obstructed digestive tracts and childhood leukemia.

Yoga poses (asanas) help to stretch, tone and strengthen the entire body. Asanas also benefit the internal organs and help to balance and revitalize the endocrine glands. For this reason children with Down syndrome who practice Yoga stay slim and flexible, while those who do not practice Yoga tend to put on weight as they age. In conjunction with yogic breathing exercises, which have a beneficial effect on the central nervous system, asanas facilitate the development of body awareness, concentration and memory -- vital skills for any child with a developmental disability.

Down Syndrome Study Finds Families Are Happy

Down Syndrome Study Finds Families Are Happy
By Shaun Heasley


September 22, 2011 Text Size A A



Having a child with Down syndrome may come as a surprise, but it’s a good experience, families are reporting in a trio of new surveys.



Researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what’s believed to be one of the largest looks at life with Down syndrome. The findings, which will be published in three articles in the October issue of the American Journal of Medical Genetics, offer a rosy picture.



The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability.



Nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life.



“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” said Susan Levine from the disability nonprofit Family Resource Associates, who worked on the study alongside researchers at Children’s Hospital Boston and the Dana-Farber Cancer Institute. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”



Researchers did acknowledge that the survey population could be a slightly biased one since all respondents came from families that are members of nonprofit Down syndrome groups. Nonetheless, they say the findings are valuable since they offer the “largest and most comprehensive portrait of life with Down syndrome to date.”

Down Syndrome Film Gets Emmy NominationBy Michelle Diament

Down Syndrome Film Gets Emmy NominationBy Michelle Diament


August 8, 2011 Text Size A A



A documentary about the marriage of two adults with Down syndrome is up for an Emmy award.





The marriage of David and Monica Martinez is the subject of "Monica & David" which is nominated for an Emmy award. (Courtesy: HBO)

The film, “Monica & David,” premiered last fall on HBO. It followed Monica and David Martinez as they prepared for their wedding and subsequently learned to establish an independent life for themselves as newlyweds.



Now the documentary has been nominated in the outstanding informational programming category of the News & Documentary Emmy Awards.



Winners will be announced Sept. 26 at a ceremony in New York City.



This is not the first honor for “Monica & David.” The film was named best documentary feature at the prestigious Tribeca Film Festival last year.

Sign the petiton and support

http://www.ds-int.org/news/wdsd-petition