World Down Syndrome Day at UN – 3/21 – “Building our Future”
The first official World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in NY, on March 21 2012 (3/21), with the Conference “Building Our Future”.
THE EVENT CAN BE WATCHED LIVE ON THE INTERNET:
The event is sponsored by the Missions of Brazil and Poland to the UN and co-organized by Down Syndrome International, UN Secretariat for the Convention on the Rights of Persons with Disabilities and UNICEF 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 Center (NDSC), National Down Syndrome Society (NDSS) , and Special Olympics .
Inclusive education, human rights and political participation, independent living, how to work with the media and research are some of the topics that will be discussed.
World Down Syndrome Day (WDSD) – “Building Our Future”
3/21 – Conference Room 2 – UN – NY– 10 to 2:30
10:00 – 10:30am Opening Remarks and Launch of World Down Syndrome Day
Penny Robertson OAM – Chair of Board of Trustees, Down Syndrome International (DSi) – Welcome and Introductions
Dr. Asha-Rose Migiro, – United Nations Deputy Secretary-General – Message on WDSD
Ambassador Maria Luiza Ribeiro Viotti – Permanent Representative of Brazil to the United Nations
Ambassador Witold Sobkow – Permanent Representative of Poland to the United Nations
Diana Stolfo – Self-advocate, National Down Syndrome Society
1) 10:30am – 11:00am UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Efforts to Promote the Convention
Akiko Ito – Chief, Secretariat for the Convention on the Rights of Persons with Disabilities/DSPD/DESA, United Nations (Moderator)
Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF – The Convention and inclusive education
Penny Robertson – DSi – Promoting inclusion in schools in Indonesia
Shona Robertson – Australia, Self-advocate – My education…my life
Thiago Rodrigues – Brazil, Self-advocate, Carpe Diem Association – Communicating and understanding
2) 11:00am – 11:30am Human Rights and Political Participation of Self-Advocates
Emily Perl Kingsley – USA, Author of “Welcome to Holland” – (Moderator)
Jason Kingsley – USA, Self-advocate/Author – Growing up with Down syndrome
Maria Alejandra Villanueva Contreras – Peru, Self-advocate – Fighting for the right to vote
David Egan – USA, Self-advocate – Congressional advocacy: “One of us and not one among us”
Ester Nadal Tarrago – Spain, Self-advocate – Understanding the Convention
3) 11:30am – 12:00pm Changing Society Attitudes – From Neglect to Protagonist and Living in the Community
Jessamy Tang – USA, Down Syndrome International – (Moderator)
Rose Mordi – Nigeria, President of Down Syndrome Association Nigeria – Social attitudes in Africa
K.S. Sripathi – India, Down Syndrome Association of Tamil Nadu – State of Inclusion in India
Tom Forester – USA, Residential Services, ACDS – Supporting safe independence
Michael Brennan – USA, Self-advocate – Living my life
4) 12:00pm – 12:30pm 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 attention in a positive, constructive way
Patricia Almeida – Brazil, MetaSocial Institute – Occupy the Media – (Moderator)
Tatiana Heiderich – Brazil/Holland, Self-advocate – Her experience as a TV reporter
5) 12:30pm – 1:30pm Care and Treatment – Improving Quality of Life
Dr. Jose Florez – Mass Gen Hospital, Adult and Adolescent DS Clinic – Caring for adults with Down syndrome: Preparing now for a healthy future
Dr. Brian Chicoine – Adult DS Center, Lutheran Gen Hospital – Living Longer, Living Healthier
Dr. Dennis McGuire – Psychosocial Services, Adult DS Center, Lutheran Gen Hosp – Promoting Mental Health
6) 1:30pm – 2:00pm Research – Latest Down Syndrome News
Dr. Edward McCabe – Linda Crnic Institute for Down Syndrome – Exciting new era
Margie Doyle – Down Syndrome Research and Treatment Foundation (DSRTF) – Latest news on research and how to help it move faster
2:00pm – 2:30pm – Launch:
- DSi 2012 WDSD Global Video Event – Let us in! I want to learn!
- New WDSD Website
- DSi UN Convention Global Outreach Programme
There will be a book signing at the end of the conference.
- “Change the way you speak and I will change the way I understand” – By Carolina Yuki Fijihira, Ana Beatriz Pierre Paiva, Beatriz Ananias Giordano, Carolina de Vecchio Maia, Carolina Reis Costa Golebski, Claudio Aleoni Arruda, Thiago Rodrigues, by Carpe Diem Association, with the support of Secretary of the Rights of Persons with Disabilities, São Paulo State, Brazil.
- “The United Nations International Convention on the Rights of Persons with Disabilities commented by its Protagonists” – By Down España, with the support of the Ministry of Foreign Affairs and Cooperation of Spain.
2:30 – Closing
Organizers – Patricia Almeida and Jessamy Tang, Members of the Board of Trustees – Down Syndrome International
Penny Robertson – Chair of Trustees, Down Syndrome International
Penny Robertson has been involved for nearly 30 years in developing key initiatives for people with Down syndrome and other disabilities at local, state, national and international levels.
Penny started her career as a geologist. She later became a lecturer in Adult Education at Adelaide University and a teacher for the South Australian Education Department prior to the birth in 1981 of her daughter Shona, who has Down syndrome.
Penny was President of the South Australian Down Syndrome Association from 1982 to 1993. She became President of the Australian Down Syndrome Association in 1986 and held this position until 1994. Penny co-founded Down Syndrome International (DSi) in 1993. She also founded the Asia Pacific Down Syndrome Federation in 1994.
In 1994 Penny and her family moved to Jakarta, Indonesia, where she started the Australian International School (AIS). The success of the school has been such that it now has campuses in Jakarta, Bali and Balikpapan.
Penny has spoken at conferences worldwide on subjects as diverse as parent-professional interactions, medical ethics and special education where she has continued to campaign for the acceptance of people with disabilities; at the signing of the United Nations Convention on the Rights of Persons with Disabilities in New York in 2007, DSi was represented by Dan Weeks and Penny Robertson.
In 1991 the Australian Government awarded Penny as a Member of the Order of Australia for her services to the education of people with intellecual disability.
On 21 March 2011, Penny received a President’s Special Recognition Award at the 2011 World Down Syndrome Day Awards. This award recognized a lifetime’s achievement in Down syndrome advocacy and it will be formally presented at the 11th World Down Syndrome Congress in Cape Town, South Africa in August 2012.
Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF
Rosangela Berman-Bieler has been a Brazilian disability rights advocate for more than 35 years. Living in the U.S. since 1995, her most recent jobs have been for the World Bank, IADB, UNDP and other UN and international agencies.
She is also the founder and Director of the Inter-American Institute on Disability and Inclusive Development working to promote Human Rights and inclusiveness in the Latin America Region, and also in Portuguese speaking countries in Africa.
Rosangela has joined UNICEF in February 2011 as Senior Adviser and is currently serving as Chief of the UNICEF Disability Unit under the Gender, Rights and Civic Engagement Section, Division of Policy & Practice, at New York Headquarters.
Shona Robertson – Self-advocate, Australia
Shona has lived a full and interesting life which should have been the right of any child born with Down Syndrome in 1981, but sadly it was not, and even more sadly, it is still not the norm in many societies.
In her preschool years, Shona enjoyed or endured many hours of early intervention every week, from speech, movement, music, art and pre-writing to sport and social activities.
When she went to primary school, she entered a mainstream class with in-class support and played, socialised and intrigued with her age-peers. As she progressed through primary school, Shona spent more and more time in one-on-one support and some of her more intimate links with her friends began to fall away.
Shona’s life became more exciting when at the age of 13 she moved to Jakarta Indonesia with her parents, and unable to enroll her in a school which was accepting of children with special learning needs, her mother established an Australian curriculum English medium school which allowed Shona to graduate with a Year-12 certificate in 2000. For the next four years she attended a variety of post-school courses in Jakarta including a TAFE certificate 1 from Holmesglen Institute of TAFE. She also attended and spoke at conferences on disability on a regular basis, had a book of her collected poems published, and had some of her art works publicly shown, but her social life was fairly restricted, and in 2005 she returned to live in Australia and lived alone with emergency support from relatives.
For Shona however this was a step too far and after a few health and welfare crises, she moved into her parents’ house and, with some parental support and involvement, Shona was finally able to receive social benefits and to find work in a supportive environment. When her parents moved to Australia, Shona was able to join a supported housing. Shona sought paid work from her housing support agency; and today she is the happy and proud possessor of a dog, a house, a paying job and a fiance.
What more could a young lady desire?
Akiko Ito – Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities, UN
Ms. Akiko Ito is Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities and UN/Focal Point on Disability. She is also a Departmental Focal Point for Women of Department of Economic and Social Affairs of the United Nations and the DESA Focal Point for Human Rights Mainstreaming for UNDG.
Ms. Ito has extensively lectured and published on issues concerning disability and human rights at the United Nations. Previous to her current post, she worked in the Legal Affairs Section of the United Nations Drug Control Programme in Vienna, Austria.
Her academic background is in international law and the area of interest is domestic application of international law, with a focus on the rights of minorities and other disadvantaged groups.
Ms. Ito has an LL.B. in International Legal Studies from Sophia University, Tokyo, Japan, an M.A. in International Relations from the University of Chicago and an LL.M. from Boalt Hall School of Law, University of California at Berkeley.
Maria Alejandra Villanueva – Self-advocate, Peru
Maria Alejandra Villanueva Contreras, attended the Special Education Center Los Pinos, en Peru and is currently an actress at Images Theatre Company and leader of the Peruvian Society for Down Syndrome.
She has participated in different theater plays as one of the leading actresses. As an activist, she has fought for the right to vote of persons with disabilities in Peru, which led to the achievement that 24,000 people with mental and intellectual disabilities were included on the electoral roll and entitled to vote.
Maria Alejandra was a panelist at the Conference on the Convention on the Rights of Persons with Disabilities in 2011 at the United Nations in New York, to share her story. Also in 2011 she was granted Honorable Mention Award by the National Human Rights Coordination in Peru for her whole on ensuring people with mental and intellectual disabilities’right to vote.
Maria Alejandra wants to fight for all women with disabilities that are abused, discriminated against and humiliated. Interview – http://vimeo.com/channels/196947
Thiago Rodrigues – Self-advocate, Brazil
Thiago is 26 and is a member of Association Carpe Diem, in São Paulo, Brazil. He currently works as an administrative assistant but before was a waiter at Applebee’s restaurant. One of the authors of the book “Change the way you speak and I will change the way I understand”, that will be launched in English at the conference, Thiago took part at the innovative workshop Project Pipa, about sexual education for people with disabilities.
He has since become an advocate and a speaker on adult life of persons with intellectual disablities.
David Egan – Self-advocate, US
David Egan is an eager advocate for people with disabilities at the local, national and international level.
He was elected to serve on the Down Syndrome Affiliates in Action, the Down Syndrome Association of Northern Virginia, and the Special Olympics.
A Booz-Allen Hamilton staff employee in the Distribution Center since 1998 on the McLean Virginia Campus, he is a trail blazer in the competitive employment of people with disabilities.
His preparation for employment started at an early age with school inclusion and a desire to excel. David is an active athlete in Special Olympics and serves as a Global Messenger and a delegate on the advisory council of the International Special Olympics Board of Directors. David has served as co-chair for the Winter Games in the State of Virginia. .
David plays and competes in soccer, basketball, softball, tennis, and swimming. In addition to his athletic accomplishments, in the year 2000, he was elected to represent the State of Virginia at the Global Athlete Congress in the Netherlands, and in 2010 at the Global Athlete Congress in Morocco. David has received numerous awards. In 2002, he received a Hero’s Award from the Special Olympics International and a Voices Award in 2003 from the National Down Syndrome Society in New York City. In 2004, David gave a keynote speech at the NDSS conference in Washington DC. In 2006, he was the recipient of the Dan Piper Award in Vancouver, Canada. He speaks at various fundraising events building awareness and thanking.
David writes articles and was published in the Spirit Magazine “Dare to Dream” in 2000. He has visited both the House and the Senate in Washington DC lobbying for people with disabilities.
Check his employment video: LAUNCH – Careers for People with Down Syndrome
Ester Nadal Tarrago – Self-advocate, Spain
Ester Nadal Tarragó is 24 years old and lives in Lleida, Spain, independently and autonomously with 3 flatmates during the week, and with her parents in Bellpuig on weekends. She finished her secondary education in 2004 and did Training in a Hotel School for 3 years. She currently works at the Workers’ Union, with a contract and has worked at beauty centers and as a waitress before that. Ester also does voluntary work at within the project “Nous Voluntaris” of Down Lleida.
She has been a speaker for educational inclusion and about the book “The United Nations International Convention on the Rights of Persons with Disabilities as seen by its protagonists.”, that she has co-authored and is being presented at this conference.
Rose Mordi – President of Down Syndrome Association, Nigeria
Rose Mordi, a business administrator turned engineer is the founder/National President of Down syndrome Foundation Nigeria an NGO that caters for the unique needs of children/adult with Down syndrome in Nigeria and other West African countries. Her passion to affect lives positively led her to founding the Down syndrome Association of Nigeria (DSAN) in 2001, which evolved into a Foundation in 2010.
The Foundation has recorded great achievements under her leadership: sponsoring of many children overseas for corrective Surgery (Heart & eye); organizing Seminars/workshops locally and participating in international seminars/training; active participation in Special Olympics International games; Educational & vocational training for people with DS; awareness creation and advocacy. She co-initiated the Save-a-life project (SALP) which is a charity ancillary to/associated with the Down Syndrome Foundation.
She is an Executive member of the Joint National Association of Persons with Disability – an umbrella body for people with disability in Nigeria as well as a spokesperson and an ardent advocate for the less privileged, particularly for people with Down syndrome.
Ms. Mordi has received several awards (locally and internationally) in recognition of her contribution to the less privileged and is relentless in her crusade to give people with Down syndrome a chance to contribute effectively to, and be appreciated by the society in which they live.
Mr. K. S. Sripathi – Down Syndrome Association of Tamil Nadu, India
Hailing from Tamilnadu, a southern province in India, Mr. K. S. Sripathi, is a Post Graduate in Science and Business Administration. He joined the Indian Administrative Service, the premier civil service of India, in the year 1975, has held several key administrative positions in both the Provincial (State) and National levels and retired as the Chief Secretary to the Government of Tamilnadu in the year 2010, after 35 years of rendering services to the Indian Government.
During his service he has lead Indian delegations to several International Conferences.
He is presently the State Chief Information Commissioner for the State of Tamilnadu. His achievements include the drafting different National Policies.
On a social level, his primary concern has been in the overall welfare and development of human beings, especially the underprivileged and differently-abled. He has been taking a very active interest in their uplift.
Emily Perl Kingsley – Author, US
Emily Perl Kingsley broke into television in 1963 doing Script Research for the CBS series EAST SIDE/WEST SIDE, starring George C. Scott. In 1970 Ms. Kingsley joined the Children’s Television Workshop as a writer for SESAME STREET and she has received 18 Emmy Awards and 21 Emmy nominations for her work on SESAME STREET.
The mother of a child with Down Syndrome, Ms. Kingsley is a frequent lecturer on that subject and on intellectual disability and disability rights. In 1976 she was elected to the Board of Directors of the National Down Syndrome Congress and was chairperson of their Adoption Committee. She is co-chairperson of the Parent Assistance Committee on Down Syndrome of Westchester. She currently serves on the Alliance for Inclusion in the Arts, helping to encourage people with disabilities in all aspects of the media.
The story of her son, Jason, was the subject of an hour-long drama special, THIS IS MY SON, on NBC-TV in 1977. THIS IS MY SON was written by Allan Sloane, Ms. Kingsley’s collaborator on the TV movie KIDS LIKE THESE.
In 1983 THE DAILY NEWS selected Ms. Kingsley as one of the Ten Volunteer Women of the Year. In November 1985, she received the National Down Syndrome Congress’s Exceptional Meritorious Service Award.
KIDS LIKE THESE received the prestigious humanitarian award, the 1988 Christopher Award, as well as the 1988 National Easter Seals Communication Award. In addition, KIDS LIKE THESE won the 1988 ARC of Excellence Award, the Media Award from the National Down Syndrome Congress and the Community Service Award of Outstanding Service Through Media from the ARC of Norfolk, Virginia.
Ms. Kingsley is the author of the inspirational essay WELCOME TO HOLLAND which has been reprinted in many languages and in many forms all over the world. Dear Abby runs this piece every October to commemorate National Down Syndrome Awareness Month and it has been reprinted in CHICKEN SOUP FOR THE MOTHER’S SOUL and dozens of other books.
WELCOME TO HOLLAND has been reprinted by many disability groups and appears on over 200 separate websites on the internet. It has been used as the theme for several disability conferences, was worked into a patchwork quilt and is the subject of a series of oil paintings. In October 2008 Ms. Kingsley received the Secretary’s Highest Recognition Award from the U.S. Department of Health and Human Services in recognition of her 39 years of spearheading the inclusion of individuals with disabilities on Sesame Street in the United States and 140 countries around the world.
Jason Kingsley – Self-advocate, US
Jason Andrew Kingsley was born on June 27, 1974 in New York City.
When he was about 10 hours old, Jason’s parents were informed that he was born with Down syndrome. With great uncertainty, they brought Jason home and enrolled him in an Early Intervention Program at the Westchester Institute for Human Development.
Within a short time, the Kingsleys began to feel that their son had considerable potential to learn and develop. On entering public school at five, Jason was accepted into classes designated for youngsters with mild learning disabilities. He was in Learning Disability classes for his entire educational career, right through high school and post-secondary school.
Jason and his family have made numerous appearances on television and radio news programs, speaking about the potential and capabilities of individuals with Down syndrome When Jason was 15 months old, he appeared on Sesame Street, the first youngster with Down syndrome to be on the show.
Jason has received many honors and awards in recognition of his contribution towards better understanding and acceptance of people with developmental disabilities, including the Joseph P. Kennedy Jr. Foundation Families Award which was given to him at Rose Kennedy’s gala 100th Birthday Celebration in Hyannisport.
Jason has pursued other areas of his interest in drama. He joined Wig ‘N’ Whiskers, the Drama Club at his high school, and worked on props and sets, performed dramatic recitations in the annual Cabaret and had a speaking role in the spring musical OLIVER.
Jason collaborated with a close friend, Mitchell Levitz, who also has Down syndrome, on a book called COUNT US IN: GROWING UP WITH DOWN SYNDROME. The book was published in January 1994 by Harcourt Brace & Company. Jason and Mitchell were sent on a cross-country promotional book tour, and have made media appearances and signed books in over 25 different cities.
The book has been translated into Japanese and Hebrew, and an updated edition has been published in 2008. Jason is pleased with the reception the book has had so far, commenting that once people get to know people with disabilities, “strangers will become our friends.”
Jason graduated from Lakeland High School in Shrub Oak, NY in June 1994 with a full academic diploma, having passed all 6 New York State Regents Competency Tests.
For five years he lived independently in an apartment of his own in Hartsdale, NY. He now lives in the same town in a small house with two roommates.
In March 2009, Jason was honored with the Public Citizen of the Year Award by the National Association of Social Workers, New York State Chapter.
Tom Forester – Director of Residential Services at ACDS, US
Tom Forester has been Director of Residential Services since August 2008 and is responsible for the administration of the day-to-day operations of ACDS’s IRA group homes and residential apartments. Prior to the ACDS, Tom worked for ACLD as Administrator of Residential Services for eight years, and before that, worked with St. Mary’s Children and Family Services (now Mercy First) as Central Services Coordinator for its residential services for youth.
Tom’s whole career has been dedicated to working with social services agencies. Upon graduation from Cortland State, with a B.S. in Recreation Education, he spent time running three non-profit youth agencies in Suffolk County and then moved into the drug and alcohol field, overseeing treatment programs, as well as starting up the first Alcohol Prevention Agency in New York State .
Tom also has a Masters Degree in Political Science Public Affairs from Stony Brook University .
In addition to his work with ACDS, Tom has been a consultant with the Anti-Defamation League’s A World of Difference Institute, and for more than eleven years, has been providing anti-bias and diversity training to teachers and students throughout the New York and New Jersey region.
Michael Brennan – Self-advocate, US
Michael moved into ACDS’s newest home in January of 2010. He had been living at home with his mother. Michael attends FREE’s Theater Day Habilitation and is involved in many activities within the community.
Michelle Whitten – Co-Founder and Executive Director of the Global Down Syndrome Foundation, US
Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Its primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed to research and medical care for people with Down syndrome.
The Foundation is a leading national lobbying and advocacy organization for people with Down syndrome. Specifically, the Foundation is the lead voice in requiring a comparable, fair share of Federal Government support for research, improved medical care, and improved educational standards for people with Down syndrome. The Foundation organizes the Be Beautiful Be Yourself Fashion Show – the single largest annual fundraiser for Down syndrome.
Michelle has also served as the Executive Director of the Anna and John J. Sie Foundation since 2005,which has become one of the largest sources of grant money for Down syndrome-related research and programs. Michelle was a key architect in establishing the Linda Crnic Institute for Down Syndrome and its Sie Center for Down Syndrome at the Children’s Hospital Colorado.
For her Down syndrome-related work, Michelle has received several awards including the 2011 inaugural National Football Foundation Community Outreach Award, two prestigious 2011 ICON awards for the Be Beautiful Be Yourself Fashion Show, the 2010 Rainbow of Hope Award from Keshet of the Rockies, the 2009 Developmental Pathways Frances Owens Family Involvement award, the 2007 ARC Thrift Community Leadership Award, and the 2007 National Down Syndrome Congress’ Exceptional Meritorious Service Award.
Prior to her career in the non-profit sector, Michelle was President and CEO of Encore International, Inc., then the China arm of Liberty Media Corporation.
Michelle sits on the boards of ARC Thrift of Colorado, Challenge Day Denver, and the Linda Crnic Institute for Down Syndrome. She holds a Master of Arts degree in Regional Studies – East Asia and a Graduate Certificate in Business Administration, both from Harvard University and a Bachelor of Arts degree in Asian Studies from Tufts University. Michelle is married to Tom Whitten, a China and contemporary art expert. They live in Denver and have two children, one of whom has Down syndrome.
Patricia Almeida – Board Member of Down Syndrome International, Brazil
Patricia Almeida is a civil servant in the Brazilian Ministry of External Relations and advocate for the rights of people with disabilities. When her third daughter, Amanda, was born with Down syndrome in 2004, Patricia found it extremely difficult to find the needed information. Given her previous background as a journalist, she made it her quest to make available in Brazil every worthwhile piece of information about Down syndrome she came across around the world. Patricia became the moderator of one of the largest internet groups on Down syndrome, with more than 1,700 members and founded two regional parental groups.
In order to work more directly with disability issues, Patricia requested a transfer to the Brazilian Secretariat for Human Rights, where she became familiar with local legislation and public services.
Concerned about the invisibility of persons with disabilities in the mainstream media, she founded a news agency, Inclusive – Inclusion and Citizenship. As head of Inclusive, Patricia was active in the internal discussions that led to the ratification of the Convention on the Rights of Persons with Disabilities by the Brazilian Congress in 2008. Inclusive was instrumental to get the treaty approved with constitutional status and received two important national awards in 2010.
When posted in New York, Patricia coordinated the civil society’s efforts that led to the adoption of World Down Syndrome Day by the UN in 2011.
Opening the doors so that people with disability, especialy those with intellectual disabilities can speak for themselves and have a full and effective participation in society on an equal basis with others became at the same time a challenge and a goal for her.
Currently Patricia Almeida is member of the Board of Down Syndrome International, Creator and Coordinator of the news agency on disabilities and human rights, Inclusive – Inclusion and Citizenship, and Strategic Coordinator of Instituto MetaSocial, an organization that works with the media to promote the inclusion of persons with disabilities, responsible for the campaign “It’s Normal to be Different” www.itsnormaltobedifferent.org.
She is also, Director of Communication of the Brazilian Federation of Down Syndrome Associations, Honorary President of Down Syndrome Association DFDown, in Brasilia and Moderator of three parent support internet groups, and belongs to many others around the world. Her latest endeavor is the recently created Movimento Down, an internet portal that is being launched in Brazil on 3/21/2012, with broad information about Down syndrome, that congragates a number of successful experiences in Brazil and abroad and, most important, is accessible to people with intelectual disability www.movimentodown.com.br .
Tathiana Piancastelli Heiderich – Self-advocate, Brazil
A 27 years old balanced and sensible lady with great energy spirit and relationship skills, she has completed high school in 2010 and has a practical formation on a relaxing massage course.
She lives both in Brazil and in the Netherlands. In Brazil she shares an apartment with her sister (Ana Cibele, 29 years old, single), studies theater, works as a hostess in a beauty salon and is a volunteer at a physiotherapy clinic. In the Netherlands Thatiana studies English, plays copeira and is a volunteer at a small restaurant as part of a project for autonomy and independence. But her main and favorite activity is to produce the TV show “Ser Diferente” (To be Different). http://www.youtube.com/watch?v=n0K8PvBn5vM
Thathiana inspired the character with Down Syndrome by Brazilian cartoonist Mauricio de Sousa, Tati. As an actress, she participated in several theater plays and institutional commercials in Rede Globo and EPTV and was a model for the photo exhibition “Diversidade” (diversity). She is also a public speaker for Institute MetaSocial.
Dr. Jose Florez – Director of the Down Syndrome Clinic for Adults and Adolescents at the Massachusetts General Hospital, US
Jose C. Florez, M.D., Ph.D. is an Associate Professor of Medicine at Harvard Medical School, an Associate Member at the Broad Institute, and a board-certified internist/endocrinologist who directs the Down Syndrome Clinic for Adults and Adolescents at the Massachusetts General Hospital. He completed his residency and fellowship at the Massachusetts General Hospital and has additional training in neurology. He is member of the Board of Directors and the Professional Advisory Council of the National Down Syndrome Congress, and of the Clinical Advisory Board of the National Down Syndrome Society. He was the 2001 recipient of the National Down Syndrome Congress Christian Pueschel Memorial Award. He conducts active research on the genetics of type 2 diabetes, for which President Obama awarded him the 2010 Presidential Early Career Award for Scientists and Engineers, the highest honor bestowed by the United States government on science and engineering professionals in the early stages of their independent research careers. His sister Miriam, who lives in Spain and was herself the winner of the 2008 National Down Syndrome Congress Christian Pueschel Memorial Citizen Award, has Down syndrome.
Dr. Brian Chicoine – Medical Director of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, Illinois, US
Brian Chicoine M.D. is the co-founder of the Center where over 5,000 adolescents and adults with Down syndrome have been served since it opened in 1992. He is also a faculty member of the Family Medicine Residency Program at Advocate Lutheran General Hospital. He graduated from Loyola University Stritch School of Medicine and completed his Family Medicine residency at Lutheran General Hospital.
He has provided medical care for adolescents and adults with developmental disabilities for over 25 years. He has made many local, national and international presentations and has written extensively on caring for adults with Down syndrome and other intellectual disabilities including articles, book chapters, and books.
Dr. Dennis McGuire – Director of Psychosocial Services for the Adult Down Syndrome Center of Lutheran General Hospital, in suburban Chicago, US
Dr. McGuire helped to establish the Adult Down Syndrome Center, which has served the health and psychosocial needs of over 5000 adults with Down syndrome since its inception in 1992.
Dr. McGuire received his Masters degree from the University of Chicago and his doctorate from the University of Illinois at Chicago. His work experience includes over 30 years in mental health and developmental disabilities.
He presents regularly at national and international conferences, has published numerous articles and has co-authored 2 books, “Mental Wellness of Adults with Down Syndrome,” and “ The Guide to Good Health for Teens and Adults with Down Syndrome” published by Woodbine House.
Dr. Edward McCabe – Anna and John J. Sie Endowed Chair in Down Syndrome Research and Clinical Care, at the University of Colorado School of Medicine, US
Dr McCabe serves as the Executive Director of the Linda Crnic Institute for Down Syndrome. He is a Professor in the Department of Pediatrics. A pediatrician and geneticist, Ed McCabe began his research career at the age of 15 in the Pediatric Research Laboratory at the University of Maryland, School of Medicine. He received his B.A. from The Johns Hopkins University (1967), and his Ph.D. (1972) and M.D. (1974) from the University of Southern California.
In 1986, he moved to Baylor College of Medicine as Associate Professor then Professor, and Director of the Robert J. Kleberg Jr. Clinical Center in the Institute for Molecular Genetics. He established the Baylor MR Research Center, the Baylor Molecular Genetics Diagnostic Laboratory Postdoctoral Training Program, and the Baylor Child Health Research Center.
At UCLA he was Professor in the Departments of Pediatrics and Human Genetics and the Mattel Endowed Executive Chair of the Department of Pediatrics, David Geffen School of Medicine. He founded and served as Physician-in-Chief of the Mattel Children’s Hospital at UCLA. He founded and served as Co-Director of the UCLA Center for Society and Genetics. He also established the first program in NanoPediatrics, and the Personalized Genomic Medicine Center.
Margie Doyle – Community Outreach Leader for the Down Syndrome Research and Treatment Foundation (DSRTF), US
Margie Doyle currently serves as a Community Outreach Leader for the Down Syndrome Research and Treatment Foundation (DSRTF). DSRTF is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome and is the leading private source of funding in the United States for DS cognition research.
DSRTF’s vision is a world in which people with Down syndrome are fully included in academic and social environments and where they can live independently as adults. In her volunteer role as a Community Outreach Leader for DSRTF Margie is driving a grassroots initiative to raise awareness across the US about cognition research, and the critical role of DSRTF in funding this research due to disproportionately low and decreasing NIH funding.
Margie has held numerous educational and fundraising events on behalf of DSRTF in the Chicago area and is building a network of volunteers to do the same in other major metropolitan areas across the US. Margie’s work as a community organizer began 15 years ago with advocacy and fundraising initiatives for the Cystic Fibrosis Foundation on behalf of her nephew. Her volunteer efforts also include work with many groups affiliated with her Chicago area school district, where she and her husband have raised five children including her youngest son who has Down syndrome.
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 email@example.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), date of birth, address, 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.
Media Accreditation to cover the UN event: http://www.un.org/en/media/accreditation/
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) has been established by Down Syndrome International and celebrated since 2006 and observer in over 60 countries in the world. It is held on March 21st (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes this genetic ocurrence.
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 193 UN countries.
Include your event at WDSD wensite: http://worlddownsyndromeday.org/
For information on Down Syndrome:
For more information on WDSD: visit DSi website.
To know about the resolution process at the UN, visit:
3/21 – 10h – “Building our Future” – UN Headquarters in NY – Conference Room 2 – Confirmations: firstname.lastname@example.org
Pick up a WDSD badge for your Facebook Profile: http://www.picbadges.com/world-down-syndrome-day-new-logo/2481065/
Buy your WDSD DSi’s official logo T-shirt, mug and bag: http://www.printfection.com/world-down-syndrome-day
Don’t miss Down Syndrome’s International’s 11th Congress in Africa!
Down Syndrome International together with local hosts Down Syndrome South Africa invite you to participate in the upcoming (11th) World Down Syndrome Congress to take place in Cape Town South Africa. click onto www.wdsc2012.org.za for more information.
The “BIG FIVE” reasons to visit South Africa
RIGHTS | HEALTH | SOCIAL PARTICIPATION | EDUCATION | EMPLOYMENT
“Advancing Inclusion of Persons with Down syndrome”
14th August 2012 – Pre-Congress workshops and Indaba, for young adults with Down syndrome & Medical Symposium for Health Care Practitioners and others interested
15th – 17th August – Main Congress (3 days)
International Convention Centre, Cape Town, South Africa
Presented by: Down Syndrome South Africa & Down Syndrome International
In association with: SBS Conferences (Pty) Ltd