World Down Syndrome Day

“Health and Wellbeing – Access and Equality for All”

Conference

ECOSOC Chamber

United Nations Headquarters

New York

21 March 2014

PROGRAM BOOK

MESSAGE FROM THE PRESIDENT OF DOWN SYNDROME INTERNATIONAL

FOR WORLD DOWN SYNDROME DAY “HEALTH AND WELLBEING – ACCESS AND EQUALITY FOR ALL”

CONFERENCE

21 March 2014

Dear Distinguished Delegates,

As the president of Down Syndrome International it gives me great pleasure to welcome you to the 3rd World Down Syndrome

Day Congress at the UN Headquarters for 2014. As in previous years, we once again focus on UN Convention on the Rights

of Persons with Disabilities and this year’s theme is based on Article 25 on “Health and Wellbeing – Access and Equality for

All”.

According to the 2011 World Report on Disability, many people with disabilities have “unequal access to health care services

and therefore have unmet health care needs compared with the general population” and “increasing evidence suggests that, as

a group, people with disabilities experience poorer levels of health than the general population. They are often described as

having a narrower or thinner margin of health”.

All people with Down syndrome have the right to access healthcare when required on an equal basis with others without

discrimination and with proper assessment of the specific health needs of the individual.

People with Down syndrome often face challenges with respect to healthcare ranging from being denied or delayed access to

healthcare, incorrect diagnoses due to lack of knowledge or inadequate training, negative attitudes and assumptions that

conditions are attributed to the trisomy 21 diagnosis, refusal to allow patients to participate in decisions and treatment plans,

and lack of respect for an individual’s basic human right to good health and wellbeing.

The Conference will provide an opportunity for speakers to share experiences from around the world as well as hearing from

people with Down syndrome as to what they want from health care providers, amongst others.

It will further help to realise the rights of persons with Down syndrome and other disabilities to the enjoyment of the highest

attainable standard of health without discrimination on the basis of disability, as recognised by Article 25 of the United Nations

Convention on the Rights of Persons with Disabilities (UN CRPD).

Down Syndrome International is extremely grateful to the following sponsors, The Permanent Missions of Australia, Brazil,

India, Japan and Poland to the United Nations, UNICEF, UN Department of Economic and Social Affairs, World Health

Organisation and International Disability Alliance.

I trust that you will enjoy the day with us and I thank you for your participation!

Yours Sincerely,

VANESSA DOS SANTOS PRESIDENT

DOWN SYNDROME INTERNATIONAL

2014 WORLD DOWN SYNDROME DAY CONFERENCE PROGRAM

1:30pm - 2:10pm

Official Opening and Launch of World Down Syndrome Day “Health and Wellbeing – Access and Equality for

All” Conference

With the adoption of United Nations General Assembly Resolution 66/149, the international community agreed to

formally recognize World Down Syndrome Day every 21 March, to continue to raise public awareness of Down

syndrome. The resolution also calls upon the international community to continue to advocate for the rights of those

with Down syndrome, including the right to healthcare, in accordance with Article 25 of the Convention on the Rights of

Persons with Disabilities. The speakers on this opening panel will touch on the multiple ways that United Nations

Member States and agencies across the UN system are addressing this topic.

Ms. Vanessa dos Santos – President, Down Syndrome International – Welcome & Introductions

Ms. Daniela Bas – Director, Division for Social Policy and Development, UN Department of Economic and Social

Affairs

H.E. Mr. Antonio de Aguiar Patriota – Ambassador and Permanent Representative of Brazil to the UN

Mr. Lukasz Zielinski – Deputy Permanent Representative of Poland to the UN

Mr. Naoto Hisajima – Minister (Social Affairs), Permanent Mission of Japan to the UN

Mr. Werner Obermeyer – Deputy to the Exec. Director, World Health Organization at UN Headquarters

2:10pm – 2:20pm Keynote Address – Jaspreet Kaur Sekhon, Self Advocate

2:20pm – 3:10pm

Moderator: Vladimir Cuk – Acting Executive Director, International Disability Alliance

Panel: Equal Access – Addressing healthcare without discrimination, bias, or misinformation at the macro

& micro level

Persons with Down syndrome can face many barriers to appropriate healthcare ranging from open

discrimination to more subtle practices, with practitioners in some cases not realizing that they are

discriminating. This can lead to misdiagnosis and poor health outcomes. Panelists will share challenges seen on

a macro, global level as well as specific examples at the country level and recommendations will be presented

on how to address these issues.

Drew Boshell – Senior Director, Global Community Health Programs, Special Olympics, “Reducing

Disparities In Global Health Access and Status for People with Intellectual/Developmental Disabilities”

Gopal Mitra – Programme Specialist, Disability Section, UNICEF, “Inclusive Health for Children with Down

Syndrome: Perspectives on opportunities and challenges”

Rosica Koleva – Program coordinator and inclusion advisor, Trisomija 21 – Skopje, Macedonia, "Equal Access

to healthcare for people with Down syndrome: a timeline of medical concerns and an outline of good practices"

Sheila Heslam and Sara Pickard – Service Director and Self Advocate (respectively) and presenting together,

Down’s Syndrome Association, United Kingdom, “Health and Well-being – We’re Taking Control”

3:10pm – 3:20pm Break

3:20pm – 4:10pm

Moderator: Giorgi Akhmeteli – Founder, Accessible Environment for Everyone, Georgia

Panel: Equal Care – Common health concerns faced by persons with Down syndrome and medical best

practices

This panel will share current best practices in different geographical areas and in countries at different

developmental levels. A common medical condition, heart defects, will be highlighted and there will be a

discussion on how these defects can be potentially life threatening if they are not treated properly. A self-

advocate who works in a Down syndrome clinic will also share some personal experiences.

Dr. George Capone – Director, Down Syndrome Clinic, Kennedy Krieger, United States, “Health Care for All

Persons with Down Syndrome”

Prof. S. Suresh – Managing Director, Mediscan Systems, India, “Equitable health care for children with Down

syndrome - The Challenges"

Dr. John Mayer – Senior Associate in Cardiac Surgery, Boston Children’s Hospital, and Professor of Surgery,

Harvard Medical School, United States, “Down Syndrome and Congenital Heart Disease”

Benjamin Majewski – Self Advocate – Self Advocate Resource Specialist, Massachusetts General Hospital,

Down Syndrome Program, United States, “A Self-Advocate's Perspective: Medical Issues Affecting People with

Down syndrome”

4:10pm – 5:00pm

Moderator: Carolyn Cronin – Executive Director, The LuMind Foundation (formerly Down Syndrome

Research and Treatment Foundation)

Panel: Equal Research Emphasis – Areas of promise; Latest in Down syndrome research; Down syndrome

and Alzheimer’s disease

Although there is less funding for Down syndrome on a per capita basis than many other genetic conditions, the

research world has made tremendous progress. Relationships now exist between government agencies, NGOs

and research scientists. It is an exciting new world - research has shown there are clear links between Down

syndrome and Alzheimer’s disease, there are clinical trials for treatments to improve cognition, and more.

Dr. Yvonne Maddox – Deputy Director, Eunice Kennedy Shriver National Institute of Child Health and

Human Development (NICHD), National Institutes of Health and Director, NIH Down Syndrome Consortium,

United States, “Down Syndrome Research and Advocacy: Improving Lives Together”

Dr. William Mobley – Distinguished Professor and Chair of the Department of Neurosciences at University of

California San Diego (UCSD), Executive Director of UCSD's Down Syndrome Center for Research and

Treatment, and Florence Riford Chair of Alzheimer Disease, United States, “Enhancing cognition in people

with Down Syndrome”

Prof. Tony Holland – University of Cambridge, Intellectual and Developmental Disabilities Research Group

and Chair in Learning Disabilities, The Health Foundation, United Kingdom, “Understanding the link between

Down syndrome and Alzheimer’s disease: developing preventative treatments”

Debora Seabra – Self Advocate – Brazil, “Healthcare must be inclusive – Article 25 of UN Convention on the

Rights of Persons with Disabilities”

5:00pm – 5:50pm

Moderator: Jaroslaw Pieniak – Co-founder, Zespoldowna.info, Poland

Panel: Equal Prospects – Importance of physical and mental healthcare for total wellbeing and living a full

life

Article 25 of the Convention on the Rights of Persons with Disabilities provides that persons with disabilities,

including Down syndrome, are entitled to health. To close the World Down Syndrome Day Conference for

2014, this panel will highlight the importance of this basic human right, not just so a person can stay alive

physically, but for him or her to live a meaningful and full life.

Dr. Karen Summar – Healthcare legislative assistant for U.S. Congresswomen Marsha Blackburn, former

Joseph P. Kenney Foundation Public Policy Fellow; and former Director of several Down syndrome clinics,

United States, “Mental wellness and illness in people with Down syndrome”

Dr. Balbir Singh – Trustee, Down Syndrome International and Founding Chairman, Down Syndrome

Association, Singapore, “Better access for Healthcare for persons with Down syndrome – a Caregiver’s

perspective”

Dr. Vera Mendes – General Coordinator of Health for People with Disabilities, Ministry of Health, Brazil,

"Health guidelines for people with Down syndrome – working with civil society to improve equity and

integration for health issues”

Thanjiwe Ndebele – Self Advocate – National Chairperson of the Self Advocacy Movement of South Africa, a

programme of Down Syndrome South Africa, “Promoting healthy lifestyles through self advocacy”

5:45pm – 6pm Conference Close

Closing Remarks: Vanessa dos Santos – President, Down Syndrome International

Sponsored by

The permanent missions of Australia, Brazil, India, Japan, and Poland to the United Nations, UN Secretariat for

the Convention on the Rights of Persons with Disabilities, UNICEF, World Health Organization, and

International Disabilities Alliance. Organized by Down Syndrome International. Special Thank you to Thomas

Forester and all the volunteers from ACDS.

World Down Syndrome Day Conference Organizing Committee

Rosangela Berman Bieler I Andrew Boys I Vladimir Cuk I Vanessa dos Santos I Fred Doulton I Shoko Haruki I

Amit Kumar I Gabrielle Krasowski I Werner Obermeyer I Adriana telles ribeiro I Balbir Singh (WDSD Committee

Chair) I Jessamy Tang (Conference Chair) I Robert Venne I Karina Węgrzynowska

www.worlddownsyndromeday.org I www.ds-int.org

BIOS

GIORGI AKHMETELI

Founder, Accessible Environment for Everyone

Representative, Association of Professionals and Parents of Children with Down Syndrome, Georgia

Giorgi Akhmeteli, 31 years old, recently founded Accessible Environment for Everyone from Georgia

after experiencing a traumatic injury which has required him to be in a wheelchair. Since 2003,

Giorgi has experienced first hand what it is to be disabled in Georgia and has come to realize that the

disabled represent one of the most marginalized minorities in Georgia. He is passionate about

advocating for the disabled so he is eager to represent, Association of Professionals and Parents of

Children with Down Syndrome in Georgia, at today’s conference. Giorgi will soon graduate from the

McCain Institute and looks forward to sharing his new found knowledge and experience with the

Accessible Environment for Everyone team members and leading the organization to a new level.

DANIELA BAS

Director, Division for Social Policy and Development (DSPD),

United Nations Department of Economic and Social Affairs (UN DESA)

Daniela Bas, politologist, graduated in Political Science/International Relations from the Universita

degli Studi de Trieste (Italy) in December 1985. Since May 2011 she has been appointed Director of

the Division for Social Policy and Development of the United Nations Department for Economic and

Social Affairs in New York, USA.

She is also a certified Life Coach and Journalist. As a broadcaster, Ms. Bas has promoted the concept

of “tourism for all” in Radio/TV programmes.

Other roles she covered from 1986 to May 2011: UN Professional Officer on humanitarian affairs until 1995; Italian

representative on the topic of Tourism for All to the European Commission; Special Advisor on Fundamental Rights of the

Vice President of the European Commission (Mr. Frattini), and Member of the Board of Directors of the European Union

Agency of Fundamental Rights. She also covered managerial roles as Director of Training Centres and Project Leader for the

Municipality of Trieste (Italy).

From 2005 until March 2011, she worked as adviser and expert for the Italian Ministry of Foreign Affairs and the Presidency

of the Council of Ministers on social policies and humanitarian affairs.

DREW BOSHELL

Senior Director, Global Community Health Programs, Special Olympics International, United States

Drew Boshell joined Special Olympics International in 2012 as Senior Director, Global Community

Health Programs. In this role, he oversees the Healthy Communities project launched at the Clinton

Global Initiative and implemented by fourteen Special Olympic Programs around the globe. The

project is designed to decrease the health disparities that exist for people with intellectual disability

by developing partnerships to support increased access to care, expanding health programming to

include locally relevant health conditions such as HIV, malaria and obesity, and integrating health

throughout the Special Olympics movement for the benefit of the 5 million Special Olympics

athletes and others with intellectual disability worldwide.

A certified planner originally from Vancouver, Canada, Drew received his Bachelor of Science Degree in biology from the

University of British Columbia. He continued his studies attaining a first class Honors degree in Planning as well as a

Master's Degree in Development Planning from the University of Queensland. After completing an internship with the

Canadian government in Vietnam, Drew worked several years as Country Director for an international NGO based in

Mongolia, Namibia and Malaysia, focusing on youth development, community development and environmental projects.

Projects completed included construction of energy efficient medical clinics in partnership with the UNDP Mongolia, water

and sanitation systems in Malaysia and primary schools in partnership with the Ministry of Education, Namibia. Drew

continued his international career as Director of the ORBIS flying eye hospital, delivering health care capacity building

programs throughout Asia, Africa, South America and the Middle East. During his time working abroad, Drew completed

over 150 projects in 20 countries directly benefiting hundreds of thousands of the world’s most marginalized people. One of

his greatest accomplishments was founding imagine1day.org, a non-profit organization bringing access to education to

children in Ethiopia. To date, the organization where he continues to serve as founding director has benefited over 63,000

children at 123 schools in Tigray, Ethiopia. Drew and his family recently moved to Washington, DC from Borneo, Malaysia

where he was overseeing a large scale Community Development and Conservation Program.

GEORGE CAPONE

Director, Down Syndrome Clinic and Research Center, Kennedy Krieger

Associate Professor, John Hopkins School of Medicine, United States

Dr. Capone is the Director of the Down Syndrome Clinic and Research Center at Kennedy Krieger

Institute. He is an Associate Professor of Pediatrics at John Hopkins School of Medicine and

conducts collaborative and ongoing research in the areas of neuroimaging, neurobehavioral

phenotypes, mood disorders, sleep disorders, pharmacologic management and clinical trials. He

serves on the Board of Directors of the National DS Congress, the Clinical & Scientific Advisory

Boards of the National DS Society, the NIH-NICHD DS Consortium, and is a member and a

founding Director of the Down Syndrome Medical Interest Group-USA Inc.

A graduate of Wesleyan College and University of Connecticut Medical School, Dr. Capone

completed his residency and fellowship at Cincinnati Children’s Hospital and another fellowship at

John Hopkins University School of Medicine. He lives in Maryland with his wife Mary, son Daniel, and Maggie their

Australian Shepard. His daughter, Lauren, lives in California.

CAROLYN CRONIN

Executive Director, The LuMind Foundation (formerly Down Syndrome Research and Treatment Foundation),

United States

Carolyn Cronin has been the Executive Director for The LuMind Foundation since January 2013. In

this position, Cronin provides vision, leadership, strategic direction and administrative oversight for

the fundraising effort of the Foundation, the staff and its ongoing support of other research

organizations.

An experienced non-profit executive with over twenty years of progressive experience managing and

leading non-profit organizations, Cronin has a strong background in developing and cultivating

relationships with individuals and organizations in support of further fundraising programs and

growth initiatives.

Cronin was previously the President of the National Multiple Sclerosis Society (NMSS) for its New York City – Southern

New York chapter, where she was responsible for providing leadership in all areas of the chapter’s operations including fund

development, client programs, community relations, financial management, staff development, and board partnership. Prior to this she was the President and CEO of Accelerated Cure Project for MS. In collaboration with the Board and staff,

she created a comprehensive fundraising campaign that increased revenue over 50% in less than twelve months. She was the

Executive Director for seven years at the Cystic Fibrosis Foundation in the Greater Illinois Chapter, providing overall

leadership and management to create cost effective and ongoing sources of revenue, community presence, and mission

enhancement for the organization while doubling the revenue during her tenure. Cronin spent the last decade in leadership

positions for non-profit organizations including Prevent Blindness America, Foundation Fighting Blindness, American

Cancer Society and Maryknoll Fathers and Brothers. A native of Peru, Indiana, Ms. Cronin attended Ball State University.

She completed the CFRM at the Indiana University Center on Philanthropy and most recently was awarded a scholarship to

participate in the Strategic Perspectives in Nonprofit Management Program at Harvard Business School.

VLADIMIR CUK

Acting Executive Director, International Disability Alliance, United States

Vladimir Cuk serves as the Acting Executive Director of the International Disability Alliance. Mr.

Cuk is responsible for coordinating the IDA Secretariat, IDA advocacy towards the United Nations

(UN) system, UN agencies (UNICEF, UNDP, UN Women, ILO, OHCHR, WHO), the World Bank,

and other international human rights organizations. In particular, Mr. Cuk is engaged in promoting

the rights of persons with disabilities in the post-2015 development agenda and in the work of the

UN Open Working Group on the Sustainable Development Goals. He worked for 15 years

promoting the rights of young people with disabilities in Eastern Europe, the Middle East, Africa

and United States. Mr. Cuk received his M.S. degree from the University of Illinois at Chicago in

Disability and Human Development. He has received seven awards in recognition for his academic achievements. Mr. Cuk

has published a book, several articles and encyclopedia entries, and has delivered over 60 presentations and workshops across

the globe.

VANESSA DOS SANTOS

President, Down Syndrome International, South Africa

Vanessa dos Santos is the mother of 3 boys of whom the youngest has both Down syndrome and

cerebral palsy.

She has been involved with Down Syndrome South Africa (DSSA) since his birth in 1995. Vanessa

has also been a Board member of Down Syndrome International (DSi) since 2003.

Much of the work she has been involved in has been focusing on poverty and disability and she has

been instrumental in setting up "Outreach Support Groups" and “Self Advocacy Groups” throughout

South Africa and is the founder member of the Self Advocacy Movement of South Africa (SAMSA)

and Inclusion South Africa (ISA). She is also very passionate about the human rights of individuals

with Down syndrome and intellectual disabilities. Other areas of interest are policy development that

encourages the improvement of lives of disabled people, early intervention, inclusive education, self-advocacy and supported

employment. She completed Masters in Philosophy in Disability Studies at University of Cape Town in 2010.

In 2012 Vanessa became President of Down Syndrome International and will serve in this position until August 2015.

SHEILA HESLAM

Services Director, Down’s Syndrome Association, United Kingdom

Sheila Heslam is Services Director at the Down’s Syndrome Association (DSA) in the UK, overseeing the

information, training / consultancy and communications departments and with responsibility for the

employment programme.

Current responsibilities focus on developing the support and information the organisation can provide to all

those with an interest in Down’s syndrome. Sheila has a strong background in the field of learning

disabilities, within health, education and social care. A qualified teacher in special education, and a

registered nurse in learning disabilities, Sheila worked as a community practitioner within a multi-disciplinary team,

advising and supporting families and professionals. This was followed by a number of years in higher education, teaching

across diability courses at undergraduate and post-graduate level. Responsible for student placements at several universities,

across health, education and social care, Sheila managed to combine both practical and academic experience, always in the

field of learning disabilities. This broad experience has involved working closely with teachers, parents, children and adults

with disabilities, the health care system and the social care system. Particular interests include working with families and

social inclusion.

Sheila joined the DSA in 2008 and has either led or been involved in a number of research projects with the membership,

resulting in Tell it Right, Start it Right – a programme for midwives and other health professionals; WorkFit – an

employment programme connecting people with Down’s syndrome and Employers; and Better Health Care for Adults with

Down’s syndrome, including the development of a Health Book for the surveillance of health issues for use with medical

practitioners.

MINISTER NAOTO HISAJIMA

Minister for Human Rights and Humanitarian Affairs, Permanent Mission of Japan to the United Nations

Mr. Naoto Hisajima, Minister for Human Rights and Humanitarian Affairs at the Permanent Mission

of Japan to the United Nations, was appointed to his current position in 2012.

Before his appointment, Mr. Hisajima served as Minister at the Embassy of Japan in France from

2010. He served as Director for Climate Change in the Japanese Ministry of Foreign Affairs from

2005-2008, and then as Director for United Nations Policy until 2010. Working for Japan’s Foreign

Ministry since 1986, he has also served at the Japanese Embassies in Zambia, the Netherlands and

Singapore.

PROFESSOR ANTHONY JOHN HOLLAND

Chair of Learning Disabilities, University of Cambridge

Lead of the Cambridge Intellectual and Development Disabilities Research Group, United Kingdom

Tony Holland trained in Medicine at University College and University College Hospital, London,

qualifying in 1973. After some years in General Medicine he then trained in Psychiatry at the Maudsley

Hospital and Institute of Psychiatry in London. In 1992 he moved to the Department of Psychiatry at

the University of Cambridge and in 2002 he was appointed to the Health Foundation Chair in Learning

Disability at the University.

He leads the Cambridge Intellectual and Developmental Disabilities Research Group

(www.CIDDRG.org.uk) in the Department of Psychiatry. This is a multidisciplinary group that

undertakes a broad range of research relevant to people with intellectual disabilities. His specific interests include the Prader

Willi Syndrome; the relationship between Down’s syndrome and Alzheimer’s disease. He was an adviser to the UK Parliament

on the Mental Capacity Act 2005 for England and Wales. In 2010 he was elected a Fellow of the UK Academy of Medical

Sciences and appointed a Senior Investigator by the Department of Health, National Institute for Health Research (NIHR). He

is editor of the Journal of Intellectual Disability Research (JIDR) and was awarded with a life time achievement award by the

Down’s Syndrome Association (UK) in 2011.

ROSICA KOLEVA

Program Coordinator and Inclusion Advisor, Trisomija 21 – Skopje, Macedonia

Rosica Koleva holds a Master’s degree in Inclusive education from the University of Cambridge (UK)

and a Bachelor’s degree in Special Education and Speech and Language Pathology from Sts. Cyril and

Methodius University (Macedonia). She has been professionally involved in establishing learning

support systems and introducing inclusive practices in two schools in Macedonia. She is currently

working on adapting a Work Readiness Skills curriculum for persons with intellectual disabilities.

As a sister of a young man with Down syndrome who has undergone several complicated heart

procedures, as a speech therapist and a member of a Down syndrome association, she is well-

acquainted with the medical issues people with Down syndrome face on a daily basis. For many years

she has been a vocal activist for the rights of people with disabilities. As the event coordinator of the

Down syndrome association Trisomija 21-Skopje, together with the Institute for Special Education and Rehabilitation she has

co-organised two seminars related to healthcare and inclusion of persons with Down syndrome, several fund-raising events,

workshops and exhibitions. In 2013 she co-founded a network of parents and professionals that aims to raise awareness about

the (non-) implementation of the UN CRPD in Macedonia.

YVONNE T. MADDOX, Ph.D.

Deputy Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

National Institutes of Health (NIH), United States

Dr. Yvonne Thompson Maddox is the deputy director of the Eunice Kennedy Shriver National

Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). In

this role, Dr. Maddox guides the organizations and programs of the NICHD, advises the director on

matters regarding the internal affairs of the $1.3 billion Institute budget that supports research on

child development, developmental biology, nutrition, AIDS, mental retardation, population issues,

reproductive biology, contraception, pregnancy, and medical rehabilitation. Dr. Maddox has also

served as the acting deputy director of the NIH.

Throughout her academic and government career, Dr. Maddox has been a champion of issues related

to women and children. She leads two teams of international scientists as part of a joint India-U.S. Partnership to improve

reproductive health and maternal and child health in both countries. In addition, she directs the NICHD Safe to Sleep

campaign (formerly the Back to Sleep campaign) to reduce sudden infant death syndrome (SIDS) and the NIH Down

Syndrome (DS) Consortium, a federal/private partnership to advance medical research for affected communities living with

DS. Dr. Maddox is a spokesperson for the NICHD in the area of health equity and leads several NIH-wide and Department

of Health and Human Services’ (DHHS) committees and working groups. She chairs the Federal SIDS/Sudden Unexpected

Infant Death Working Group, served as Co-Chair of NIH’s working group to develop the strategic plan to eliminate health

disparities and Executive Director of the DHHS Cancer Health Disparities Progress Review Group and Co-Chaired the

DHHS Initiative to Reduce Infant Mortality. In addition, Dr. Maddox has directed the National Center for Medical

Rehabilitation Research and the Prevention Research and International Programs, both at the NICHD.

During her career at NIH, Dr. Maddox has received numerous honors and awards, including two of the most prestigious in

the Federal career civil service, the Presidential Distinguished Executive Rank Award and the Presidential Meritorious

Executive Rank Award, as well as the Public Health Service Special Recognition Award, the DHHS Secretary’s Award, the

DHHS Career Achievement Award and the NIH Director’s Award. In addition, she has received numerous awards for her

research, including the HeLa Award for Leadership in the Reproductive Sciences. She is the recipient of several honorary

degrees, a member of the American Physiological Society and has served on many public service and academic boards, and

author of numerous scientific papers and review articles.

Dr. Maddox received her B.S. in biology from Virginia Union University, Richmond and her Ph.D. in physiology from

Georgetown University. She studied as a visiting scientist at the French Atomic Energy Commission, Saclay, France, and

graduated from the Senior Managers in Government Program of the Kennedy School of Government, Harvard University.

BENJAMIN MAJEWSKI

Self-advocate, Resource Specialist, Massachusetts General Hospital Down Syndrome Program, United States

Benjamin Majewski is a Resource Specialist with the Down Syndrome Program at Massachusetts

General Hospital in Boston, Mass. He is also employed by O’Hara’s Restaurant in Newton, MA as a

busperson. His third job is a seasonal position with the grounds crew of the Boston Red Sox baseball

team. Ben is currently a student with the Transitional Scholars Program of MassBay Community

College, a program which supports people with intellectual disabilities at the college level.

In 2011, Ben was the keynote speaker for the Massachusetts Down Syndrome Congress annual

conference. Ben has been active with the Self-Advocate Advisory Council of the Massachusetts Down Syndrome Congress. Since 2010, he has been a guest speaker with the Understanding Differences Program, a

disability awareness curriculum in the Newton Public Schools. He enjoys volunteering at Rosie’s Place, Boston, MA, a

shelter for poor and homeless women. A huge sports fan, he plays soccer, basketball and baseball and has competed in the

Special Olympics as a golfer and alpine skier.

DR. JOHN MAYER

Professor of Surgery, Harvard Medical School Senior Associate in Cardiovascular Surgery, Boston Children’s Hospital, United States

Dr. John Mayer received his BA degree from Yale College and his MD degree from Yale University

Medical School. He completed his general surgery and cardiothoracic surgery training at the

University of Minnesota and following his post-doctoral training, Dr. Mayer served as chief of

cardiothoracic surgery at the Keesler USAF Medical Center and staff surgeon at the University of

Alabama Medical Center. He joined the Harvard Medical School faculty in 1984 and was appointed

senior associate in cardiovascular surgery at Boston Children’s Hospital in 1989. In 1996, he was

named Professor of Surgery at Harvard Medical School. Dr. Mayer is the first Tommy Kaplan Chair

in Cardiovascular Studies at Boston Children's Hospital. He is certified by the American Board of

Thoracic Surgery with a subspecialty certificate in congenital heart surgery. He has published

extensively in the field of pediatric cardiac surgery and cardiovascular tissue engineering and is an

author on 300 scientific papers and 30 book chapters. He has a long standing interest in health policy and has served on the

AMA Relative Value Update Committee and the Society of Thoracic Surgeons Health Policy Workforce for 15 years. He is

Past President of the Society of Thoracic Surgeons and is currently a member of the board of directors of the American Board

of Thoracic Surgery and the American Board of Medical Specialties.

DR. VERA MENDES

General Coordinator of Health for People with Disabilities, Ministry of Health, Brazil

Dr. Mendes is General Coordinator of Health of People with Disabilities in the Department of

Strategic and Programmatic Actions Care Department, Ministry of Health, Brazil. She also holds

positions as Assistant Professor, School of Human Sciences, and Researcher, Laboratory for the

Study of Collective Intelligence and Bio - Politics of Health at Pontifical Catholic University of São

Paulo. Her papers are well published and she is a sought after conference speaker. Dr. Mendes

received her PhD in Clinical Psychology from the Center for Contemporary subjectivities and her

Master in Communication Disorders from the Pontifical Catholic University of São Paulo.

GOPAL MITRA

Programme Specialist, The United Nations Children’s Fund (UNICEF)

Gopal Mitra works as a Programme Specialist- Children with Disabilities in the Disability Section,

Programme Division at UNICEF HQ. As part of the Disability Section’s mandate, his work involves

mainstreaming disability across UNICEF’s policies and programmes. He also supports UNICEF’s

engagement with the Inter Agency Support Group on Disability and with the UN Partnership on the

Rights of Persons with Disabilities and its Multi-Donor Trust Fund. Within the Disability Section he

works on policy and cross sectoral issues and acts as the focal point on inclusive humanitarian action,

assistive technology and on adolescents and young people with disabilities.

Prior to joining UNICEF, Mitra was the International Policy and Campaigns Manager at the

international NGO Leonard Cheshire Disability (LCD) where among other things, he set up a global

campaign project involving young people with disabilities across 21 countries of Africa, Asia and the

Caribbean. He has also held the position of Inclusive Education Manager of South Asia in LCD where he provided technical

support to inclusive education programs in India, Pakistan, Bangladesh and Sri Lanka.

Before his work in civil society organisations, Gopal Mitra was an officer in the Indian Army. As a Major in the Indian Army

Mitra took part in both counter insurgency operations and in development projects, as well as in disaster response. In January

2000 he was decorated with the “Sena Medal”, by the President of India for Gallantry/ distinguished service. Later that year,

he was severely injured in an explosion and became blind.

Mitra has an MA in Social Work, specializing in Social Work Administration, from the Tata Institute of Social Sciences in

India as well as an MSc in Development Management from the London School of Economics (LSE) in the UK.

WILLIAM C. MOBLEY, M.D., PH.D.

Distinguished Professor and Chair, Department of Neurosciences at University of California San Diego (UCSD)

Executive Director, UCSD’s Down Syndrome Center for Research and Treatment, United States

William C. Mobley is a Distinguished Professor and Chair of the Department of Neurosciences at

UCSD. He also serves as Executive Director of UCSD's Down Syndrome Center for Research and

Treatment and is the Florence Riford Chair of Alzheimer Disease Research.

He came to UCSD in June 2009 from Stanford University in Palo Alto, Calif., where he served as

the John E. Cahill Family Professor in the Department of Neurology and Neurological Sciences and

was the founding director of the Neuroscience Institute.

Dr. Mobley has a distinguished record of academic achievement and is considered one of the most prominent academic

neurologists in the US. He has an international reputation for his research on degenerative disease of the central nervous

system as well as being a leader in translational medicine, bridging clinical and basic science.

Dr. Mobley earned his Ph.D. from Stanford University in Neuro- & Behavioral Science in 1974, and an M.D. from the same

institution in 1976. He then completed an internship in pathology in 1977, also at Stanford, and went on to complete a

residency and fellowship in neurology and pediatric neurology at The Johns Hopkins University in 1982. While there he was

selected to serve as Chief Resident in Pediatric Neurology from 1981 to 1982. In 1983, he became certified by the American

Board of Pediatrics and in 1987 was certified by the American Board of Psychiatry and Neurology with Special Competence

in Child Neurology.

Dr. Mobley's research focuses on the neurobiology of neurotrophic factor actions and signaling and on the hypothesis that

dysfunction of such signaling mechanisms contributes to neuronal dysfunction in developmental and age-related disorders of

the nervous system. His emphasis on the neurobiology of Down syndrome has brought new insights into the disease,

including possible treatments. He has also done pioneering work on the neurobiology of Alzheimer's disease (AD) using a

mouse model of Down syndrome. These studies were based on the observation that virtually all adults with Down syndrome

develop Alzheimer's disease by age 50. This knowledge paved the way for Dr. Mobley's ongoing studies of AD in

experimental models.

Dr. Mobley has received many awards and distinctions. He is a member of the Institute of Medicine, National Academy of

Sciences. He collaborated with the Dalai Lama to create the Center for Compassion and Altruism Research and Education at

Stanford University. He also serves as the expert advisor to the Congressional Down Syndrome Caucus (for which he won

the Christian Pueschel Memorial Award in 2007).

He is the recipient of both the Zenith Award and the Temple Award from the Alzheimer's Association and was chosen to

receive the Cotzias Award of the American Academy of Neurology in 2004. Dr. Mobley is Past President of the Association

of University Professors of Neurology, of the Professors of Child Neurology, and of the International Society for

Developmental Neuroscience. He is a Fellow of the Royal College of Physicians and in 2006 was named a Fellow of the

American Association for the Advancement of Science.

In 2011 Dr. Mobley was honored with the International Sisley-Jérôme Lejeune Prize in Paris by the Jérôme Lejeune

Foundation for his contributions to the field of Down syndrome and genetic intellectual disabilities. This led to his

recognition by U.S. Rep. Pete Sessions on the floor of the U.S. House of Representatives.

THENJIWE THANDEKILE NDEBELE

Self-advocate, National Chairperson of the Self Advocacy Movement, Down Syndrome South Africa

Thenjiwe is the National Chairperson of the Self Advocacy Movement of South Africa (SAMSA)

which is a programme of Down Syndrome South Africa (DSSA) and represents SAMSA on the

national DSSA board. She was appointed by the self advocates at a meeting in 2013 and will serve a

four year term. Thenjiwe lives at home with her mother and is 24 years of age. Upon graduating

school in 2010 she was awarded a trophy as the Best Overall Student for the duration of her

schooling years. During this time she also received other certificates for various achievements.

In 2011, she started attending the Workshop at Novalis in Johannesburg. She also works one day a

week at a bakery.

WERNER OBERMEYER

Deputy to the Executive Director, World Health Organization of at United Nations Headquarters, United States

Werner Obermeyer is the Deputy to the Executive Director of the World Health Organization office

at UN Headquarters in New York. His portfolio includes the promotion of health priorities in the

General Assembly and other inter-governmental processes, WHO’s relations with the UN system

entities based in New York, as well as non-governmental organizations that focus on public health

issues. He was responsible for the negotiations which culminated in adoption of the Political

Declaration on the Prevention and Control of Non-Communicable Diseases, and is also the focal

point for resolutions on global health and foreign policy, road safety, malaria, health and

environment, disabilities, mental health and tobacco control, as well as the post 2015 development

agenda.

Prior to joining the World Health Organization he served as Deputy Director in the UN Environment Programme (UNEP)

New York office, responsible for UNEP reform, environmental governance and health, and sustainable development. Before

joining the United Nations he served as the South African Deputy Permanent Representative in Kenya, from 1996 to June

2000, and held various other diplomatic assignments in Africa and South America, from 1988 to 1994.

H.E. MR. ANTONIO DE AGUIAR PATRIOTA

Ambassador and Permanent Resident of Brazil to the United Nations

The Permanent Representative of Brazil to the United Nations, Ambassador Antonio de Aguiar

Patriota, was born in Rio de Janeiro on April 27, 1954. He was Minister of External Relations of

Brazil from January 2011 to August 2013; Deputy Foreign Minister from October 2009 to December

2010; Ambassador of Brazil to the United States from 2007 to 2009; Undersecretary General for

Political Affairs at the Foreign Ministry from 2005 to 2007; Chief of Staff to the Foreign Minister in

2004; and Secretary for Diplomatic Planning at the Foreign Ministry in 2003.

Overseas, he served at Brazil’s Permanent Mission to the International Organizations in Geneva

(1999-2003), having acted for two years as Deputy Permanent Representative to the World Trade

Organization; at Brazil’s Permanent Mission to the United Nations in New York (1994-1999), where

he was a member of the Brazilian Delegation to the U.N. Security Council; at the Embassies of Brazil in Caracas (1988-

1990) and Beijing (1987-1988); and at Brazil’s Permanent Mission in Geneva (1983-1987).

From 1992 to 1994, he was Deputy Diplomatic Advisor to then President Itamar Franco. He graduated from Brazil’s

Diplomatic Academy, the Rio Branco Institute, in 1979. His thesis for the Advanced Studies Course at the Rio Branco

Institute, titled “The Security Council After the Gulf War: articulating a new paradigm for collective security”, was published

in 1988.

Ambassador Antonio Patriota is married to Tania Cooper Patriota, who is currently the Representative of the United Nations

Population Fund (UNFPA) in Bogotá and Caracas, and they have two sons, Miguel and Thomas.

SARA PICKARD

Self Advocate, United Kingdom

Sara Pickard is a self-advocate who has Down’s Syndrome and lives near Cardiff, in South Wales.

She has worked full-time for Mencap Cymru, a charity which works on behalf of those with learning

disabilities throughout Wales, for nearly eight years. Her current role is as Participation Officer for

the ‘Inspire Me’ project which involves her delivering training to young people with learning

disabilities and a range of additional needs, in schools and colleges throughout Wales. She has

worked as a volunteer in Lesotho and Botswana in Southern Africa as part of her work, and was a

speaker at the World Down’s Syndrome Congress in Cape Town, South Africa in 2012. She has also

been a keynote speaker at a number of conferences held in Wales dealing with education and health

issues and is a Trustee of her local Down’s Syndrome Support Group.

Sara has been an elected Councillor on her local Community Council for the past 6 years and takes great pride in ensuring

that the needs of those with disabilities in her local community are brought to the attention of her Community Council. She is

very passionate about connecting with young people who have learning disabilities through her work and drives the

importance of their representation in public life.

Sara is an accomplished actress and has played leading roles in two professional UK tours produced by Hijinx Theatre

Company. Apart from drama, her other passions are music and dance. Sara was honoured to be chosen as a Torchbearer at

the London Olympics in 2012 and carried the Olympic Flame on part of its journey in to her home city of Cardiff.

Sara has been involved in a number of TV and radio programmes and interviews in relation to her work, and her interest in

drama. She has reviewed the newspapers, live, on Radio Wales on two occasions and has conducted many live radio

interviews on current disability issues

JAROSLAW PIENIAK

Co-founder, Zespoldowna.info, Poland

Jaroslaw (Jarek) Pieniak, 47, is co-founder of www.zespoldowna.info which is a leading Down

syndrome website in Poland. As a parent and advocate for the Down syndrome and Autistic

community in Poland, he has done a substantial amount of work including setting up workshops and

seminars, opening kindergartens for children with Down syndrome, organizing an international

conference, conducting public awareness campaigns on television, radio, and other media and more.

After much research and networking, he has also been able to move forward medical protocols for

children with Down syndrome. The City of Wroclaw awarded him the President of Wroclaw Award

for working with the educational system to mainstream children with Down syndrome in

kindergarten and in 2010, he also received DSi’s WDSD Award. He is also co-founder of the first

public school for autistic children in Poland. Mr. Pieniak is married with three sons. His oldest son majors in Biomedical

Studies at Nottigham University, his18 year old son has autism, and his 7 year old son has Down syndrome.

H.E. MR. RYSZARD SARKOWICZ

Ambassador and Permanent Representative of Poland to the United Nations

Mr. Ryszard Sarkowicz graduated with High Honors from the Jagiellonian University in Krakow,

receiving a degree in law (1977) and in philosophy (1979). He later earned his LL.D. (1993),

received tenure (habilitation - 1995) and in 2005-2009 held a position professor of law at the Faculty

of Law at the Jagiellonian University. Mr. Sarkowicz has published a vast array of works, including

over 60 papers, 5 books and 20 journal articles on various legal issues ranging from professional

ethics and legal interpretation to penal and commercial law. He also carried out research and lectured

abroad in many universities: the University of Vienna in Austria (1987), Oxford University in the

United Kingdom (1988), the European University Institute in Florence, Italy (1990), and the

University of Munich in Germany (1994-1995).

Since 1991 he has been employed in the Polish Foreign Service (Ministry of Foreign Affairs), holding various positions: a

legal counselor, Head of Legal Department of MFA, Special Envoy (in the rank of ambassador ad personam) to the

Antarctic Treaty, and Deputy Director of the Protocol Department, successively. He was also posted abroad as Consul

General of Poland in Chicago and in Sydney. From 2010 until assuming duties of the Permanent Representative of the

Republic of Poland to the UN he has been the Director of Legal and Treaty Department.

During his career in the Foreign Service he attended numerous conferences abroad and represented Poland at many bilateral

and multilateral talks and negotiations. Mr. Sarkowicz is married (wife Anna) and has one daughter (Maria); they reside in

Kraków.

DEBORA SEABRA

Self Advocate, Brazil

Débora Moura Araújo Seabra was born in 1981, in Natal, Rio Grande do Norte, Brazil. She is a high

school graduate who has been exclusively educated in regular schools. Through the Down

Syndrome Association’s Action and Dignity Programme she has held several internships as a sales

assistant, receptionist, model, and assistant teacher. After completing a teaching class and several

internships, Ms. Seabra decided she wanted to be a teacher, which is her current profession. As a

teenager, she performed with the Municipal Ballet and as an adult she took three years of theater

courses and continues to hone her skills by attending workshops. She has performed in three plays

and wishes to be an actress.

Ms. Seabra is an accomplished international speaker throughout Brazil including at the Brazil House of Representatives

(National Congress) on World Down Syndrome Day 2013. She won first place in the “People Like Us” category of Senses

Magazine and was honored by the City of Natal, State of Rio Grande do Norte Legislative Assemblies on International

Women’s Day 2013. Many newspapers, magazines and television programs have featured stories about her. She has also

been a representative of the Portuguese media at the Yomiuru Shinbun in Japan.

JASPREET KAUR SEKHON

Self Advocate, Singapore

Ms. Jaspreet Kaur Sekhon is 33 years old, and has been working as a Teacher’s Aide for 13 years.

She is also a self-advocate and an active member of Down Syndrome Association, Singapore and an

Ambassador of Down Syndrome International.

She enjoys dance and music, travelling and meeting people. Jaspreet tries to have a healthy and

active lifestyle.

In her speech, she shares some of her thoughts on the attitudes of healthcare professionals, appeals for

their professional care and voices her appreciation for the excellent work that they do. She also

addresses the important topic of how persons with Down syndrome can be contributing members in their healthcare.

DR. BALBIR SINGH

Vice Chair of Trustees, Down Syndrome International

Founding Chairman, Down Syndrome Association Singapore

Dr. Balbir Singh has been an active advocate for the intellectually challenged (Down syndrome in

particular) for more than 25 years and has served in numerous voluntary organisations and

government feedback committees. He is a Past President and existing Board member of Down

Syndrome International (DSi), Chair of DSi’s World Down Syndrome Day Committee, Advisor and

Founding Chairman of Down Syndrome Association Singapore, and has served as a Board member

of the National Council for Social Service, Singapore.

Balbir has been a prime mover of numerous innovative and pioneering programmes and events

including viz EIPIC, World Down Syndrome Day, parent support groups and AEP adult programme,

and he proactively advocates research in the Social Service and Disability sector. He has headed

organising committees of international and regional conferences and has made numerous contributions for related presentations

and articles for journals.

Balbir was awarded the PBM Medal (Pingkat Bakti Masyarakat) in recognition of his commendable service in the disability

field and social service sector by the President of Singapore. On 21 March 2011, Balbir received a President's Special

Recognition Award at the 2011 World Down Syndrome Day Awards. This award recognised a lifetime's achievement in Down

syndrome advocacy and it was formally presented at the 11th World Down Syndrome Congress in Cape Town, South Africa

in August 2012.

Balbir has had the privilege of very active support from his whole family, from the day his elder daughter, Jaspreet, was born

with Down syndrome.

KAREN SUMMAR, M.D., M.S.

Legislative Assistant for United States Congresswoman Marsha Blackburn

Professor of Pediatrics, George Washington University, United States

Dr. Karen Summar is a developmental pediatrician who is currently working as a legislative assistant in

Washington, D.C. She is the assistant for Congresswoman Marsha Blackburn, who is the vice-chair of the

powerful Energy and Commerce Committee in the United States House of Representatives.

In this position, Dr. Summar is responsible for advising the Congresswoman, drafting legislation, working

with legislative committees, communicating with federal agencies, and organizing Congressional briefings

in matters related to health.

Dr. Summar attended medical school at the University of Tennessee and completed pediatric residency training as well as

developmental pediatric fellowship training at Vanderbilt University Medical Center. She completed a Master’s degree in

clinical investigation during her fellowship in developmental pediatrics. As part of her Master’s thesis, Dr. Summar was

intimately involved in obtaining informed consent and assent from a high risk population, children with an intellectual

disability.

She is a professor of pediatrics at George Washington University and is on the faculty at Children’s National Medical Center.

She has served as the medical director at three different Down Syndrome Clinics, including Vanderbilt Children’s Hospital,

the Jane and Richard Thomas Center at Cincinnati Children’s Hospital, and Children’s National Medical Center. Prior to her

career in academic pediatrics, Dr. Summar practiced general pediatrics in a private practice for 13 years.

She is the mother of 4 daughters. Her youngest, Rachel, has Down syndrome.

PROF. S. SURESH, FRCOG

Managing Director, Mediscan Systems; Adjunct Professor, Tamil Nadu Dr MGR Medical University, India

Prof. S. Suresh is the Managing Director of Mediscan Systems, an Adjunct Professor at TamilNadu

Dr MGR Medical University, and a Visiting Professor in Perinatal Medicine at Sri Ramachandra

University in Chennai. He is a pioneer in the field of diagnostic ultrasound, established Mediscan

Systems, a state of the art obstetric ultrasound and fetal medicine centre, which from its inception,

continues to provide a huge volume of free service to those who cannot afford care. He established

foetal medicine as a specialty in India and with extensive knowledge and skills in all aspects of this

specialty developed the laboratory infrastructure needed for support and diagnosis in fetal medicine.

He has a strong sense of social responsibility and has been in the forefront of private-public partnerships interacting with the

government of Tamil Nadu in organising and implementing programs in both antenatal and neonatal screening. He is

involved in planning and executing ultrasound training programs for doctors in public health centres across Tamil Nadu. He

has also established Foetal Care Research Foundation, an NGO, to provide preventive supportive and curative care for birth

defects. He established the Birth defect registry of India, now a member of the ICBDSR, with the single-minded focus of

reducing perinatal mortality and morbidity in India. He has also established a support group for Mucoploysacchridoses which

helps over 330 children. He works closely with the Down Syndrome Association of Tamil Nadu to help create awareness

about Down syndrome.

A dedicated teacher, Prof. Suresh has trained many from India and abroad in this field. He established a state of the art

imaging software and advocates for ensuring standards in ultrasound reporting and education. He is Hon Secretary of

Voluntary Health Services, a 400 bedded charitable hospital of 60 years standing. An active Rotarian, Prof. Suresh is also an

avid photographer and amateur radio operator. Furthermore, he is well published with over 35 papers and several chapters in

text books.

JESSAMY TANG

Trustee, Down Syndrome International, United States

Jessamy Tang serves on the Board of Trustees of Down Syndrome International and has been

involved with the World Down Syndrome Day Conference at United Nations Headquarters since its

inception. Currently, she serves as Chair of the Organizing Committee (2013 and 2014.) She has

been involved with the Down syndrome community since the birth of her son, who has Down

syndrome, in 2009. She is an avid believer that those with Down syndrome should have the

opportunity to develop their full potential and believes research, advocacy, and awareness are critical

components. Over the years she has become increasingly active and has lead or been involved in

numerous fundraisers which support different Down syndrome organizations. She has co-chaired

multiple fundraisers which have benefited The LuMind Foundation (formerly Down Syndrome Research and Treatment

Foundation) which has been supported by organizations such as the National Football League Player Engagement, Ritz

Carlton Destination Club, San Francisco 49ers, Brooks Brothers, Morton’s The Steakhouse, and many more. She has also

served on fundraising committees which have benefited ACDS (formerly Association for Children with Down Syndrome) in

Long Island, New York.

As a graduate of Stanford Graduate School of Business and Massachusetts Institute of Technology, she began her career as a

management consultant with Deloitte. She then transitioned to a successful career in sports media before turning her attention

to improving the lives of those with Down syndrome. For ABC Radio, she led ESPN Radio’s transition from a syndicated

program provider to a 24 hour, 7 day a week business. As President and General Manager of ESPN 1250, WEAE-AM, in

Pittsburgh, Pennsylvania, she led her station to locally earn four “Achievement in Radio” awards and one “Sports Personality

of the Year” award. She was also the founder of the first ESPN Radio station in Boston, Massachusetts. She has spoken on

numerous panels and has served on various boards and committees including MIT Corporation Visiting Committee for the

Department of Athletics, Physical Education, and Recreation and mentor for MIT Venture Mentoring Service.

BACKGROUND INFORMATION

Resolution to recognize World Down Syndrome Day World Down Syndrome Day was proclaimed in 2011 by the United Nations General Assembly resolution 66/149,

to be observed annually. 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 Member States. The resolution is available

at: http://www.un.org/disabilities/documents/resolutions/a_res_66_149.pdf.

World Down Syndrome Day World Down Syndrome Day (WDSD) was first established by Down Syndrome International and celebrated since

2006, being observed in over 60 countries around the world. The aim of the Day is to raise awareness and increase

the understanding about Down syndrome, to promote the inherent rights and dignity of persons with Down

syndrome to enjoy full and dignified lives and to recognize the worth and valuable contributions of people with

Down syndrome. The Day also works to ensure the inclusion of people with Down syndrome in every aspect of

their community and society, in general. For more information about WDSD, visit

www.worlddownsyndromeday.org.

Down Syndrome International

Down Syndrome International (DSi) is an international charity, comprised of memberships from individuals and

organisations from all over the World. Members include people with Down syndrome, parents, family members,

friends, care givers, professionals, practitioners, researchers, organisations and more. DSi’s mission is to improve

quality of life for people with Down syndrome worldwide and promote their inherent right to be accepted and

included as valued and equal members of their communities. DSi believes this can only be achieved through

improved knowledge of the condition, sharing of information and resources, and good communication and co-

operation throughout the global Down syndrome community. For more information: www.ds-int.org.

NOTES

"Let Us In - I Want Access to Healthcare!"

Global Video Event in partnership with 50 countries

http://www.ds-int.org/let-us-in-i-want-access-to-healthcare

Langdon Down Centre, 2A Langdon Park, Teddington TW11 9PS, United Kingdom

Reg Charity No. 1091843 T: +44 (0)20 8113 4890 Reg Company No. 4327941 E: contact@ds-int.org W: www.ds-int.org