1. family and parenting

World Down Syndrome Day
“My Opportunities, My Choices” – Enjoying Full and
Equal Rights and the Role of Families” Conference
Conference Room 2
United Nations Headquarters
New York
20 March 2015
PROGRAMME
MESSAGE FROM THE PRESIDENT OF DOWN SYNDROME INTERNATIONAL
FOR WORLD DOWN SYNDROME DAY CONFERENCE
“MY OPPORTUNITIES, MY CHOICES – ENJOYING FULL AND EQUAL RIGHTS AND THE ROLE OF FAMILIES”
20 March 2015
Dear Distinguished Delegates:
As the president of Down Syndrome International it gives me great pleasure to welcome you to the 4rd World Down
Syndrome Day Conference at the UN Headquarters for 2015. This year we celebrate the 10th anniversary of World
Down Syndrome Day. The theme for 2015 is “My Opportunities, My Choices – Enjoying Full and Equal Rights
and the Role of Families”.
People with Down syndrome face many challenges and various forms of discrimination throughout their life. This
often prevents them from enjoying their basic human rights or being able to participate in all aspects of life on an
equal basis. They deserve to be treated on an equal basis as other people and must be able to enjoy the same
opportunities and choices.
Preamble (X) of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) confirms,
“persons with disabilities and their family members should receive the necessary protection and assistance to enable
families to contribute towards the full and equal enjoyment of the rights of persons with disabilities”.
Families plays an important role in supporting their child or family member who has Down syndrome. In order for
people with Down syndrome to have equal opportunities and make choices, providing them with information and
empowering them starts early on in life, which leads to self-advocacy.
The Conference will provide an opportunity for speakers to share experiences from around the world as well as
hearing from people with Down syndrome (self-advocates) as to what they want, amongst others.
It will further help to realise the rights of persons with Down syndrome and other disabilities to the enjoyment of
equal opportunities, without discrimination on the basis of disability, as recognised by the UN CRPD.
Down Syndrome International is extremely grateful to the following sponsors, The Permanent Missions to the UN
of Australia, Brazil, India, Iran, Japan, Republic of Korea, Poland, Qatar and Singapore to the United Nations,
UNICEF, UN Department of Economic and Social Affairs, International Disability Alliance and Inclusion
International.
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
2015 WORLD DOWN SYNDROME DAY CONFERENCE PROGRAM
10:00am - 10:45am
Official Opening and Launch of World Down Syndrome Day Conference “My Opportunities, My Choices” –
Enjoying Full and Equal Rights and the Role of Families”
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.
Preamble (X) of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) confirms, “persons
with disabilities and their family members should receive the necessary protection and assistance to enable families to
contribute towards the full and equal enjoyment of 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.
Welcome & Introductions – Message from Vanessa dos Santos, President, Down Syndrome International (read by
Andrew Boys)
United Nations Secretary-General’s WDSD Message – DESA
H.E. Mr. Boguslaw Winid – Ambassador and Permanent Representative of the Republic of Poland to the UN
H.E. Mr. Guilherme de Aguiar Patriota – Ambassador and Deputy Permanent Representative of Brazil to the UN
H.E. Ms. Gillian Bird – Ambassador and Permanent Representative of Australia to the UN
H.E. Mr. Motohide Yoshikawa – Ambassador and Permanent Representative of Japan to the UN
H.E. Mr. Oh Joon – Ambassador and Permanent Representative of the Republic of Korea to the UN and President
of the Conference of State Parties to the CRPD
Andrew Boys – Director, Down Syndrome International
10:45am – 11:00am
Keynote Address
Sean, Susan, and Devon Adelman (self-advocate) – United States, “Raising Expectations, Imagine the
Possibilities”
11:00am – 11:45am
The role of families in creating opportunities for children with Down syndrome
The importance of families’ positive attitudes towards their children with Down syndrome and the impact that advocating
for their inclusion can have on education, health and social professionals, families and friends, local communities and the
wider public in the short term for them and long term for everyone.
Moderator: Megan Tucker – Programme Specialist, UNICEF
Julie Duff – Cheshire Down Syndrome Support Group, United Kingdom, “The Journey to Empowerment”
Debendranath Sarangi – Chief Secretary and Advisor to the Government of Tamil Nadu (retired), India, “Role of
Enablers – Family, Society, and the Government”
Mony Teri Pettit – Penny Aika Pettit Down Syndrome Foundation, Tanzania, “Families and Communities Positive
Attitudes - Positive Results for Children with Down Syndrome - Tanzania's Experience”
Prof. Eman Gaad – Co-Founder Emirates Down Syndrome Association and Dean, Faculty of Education British
University, Dubai, United Arab Emirates, “Parents in Support of Educational and Social Inclusion of Children with
Down Syndrome: a Perspective from the Emirates”
11:45am – 11:55am
Break
11:55pm – 1:00pm
Families promoting the well-being of children and persons with Down syndrome
CASE STUDIES – Examples of the positive impact including children with Down syndrome in schools and community
activities has for them and for others and how families can be supported to advocate for this.
Moderator: Dr. Ashleigh Molloy – President, TransEd Institute, and adjunct professor, York University, Canada
Dr. Rhonda Faragher & Ruth Faragher (self-advocate) – Professor, Australian Catholic University, Australia,
"Inclusive Education for Learners with Down syndrome: The Family's Role in Getting it Right."
Erdenechuluun Chultem & Dulguun Byambadorj (self-advocate) – Mongolia, “Inspiration against Obstacles”
Andrzej Malec & Marcin Malec (self-advocate) – Poland, "How Families can Support a Person with Down
Syndrome to Live a Normal Life as Best as Possible"
Mariella Castillo & Stephanie Boghen (self-advocate) - Access Centre for Students with Disabilities (ACSD) and
independent student, Concordia University, Canada, “Making Inclusion Work: Encouraging Adults with Down
Syndrome Pursuing Higher Education”
1:00pm – 1:30pm
Lunch
1:30pm – 2:30pm
Supporting families in empowering persons with Down syndrome;
The role of families in supporting people with Down syndrome to make their own decisions and have control in their lives
and encouraging self-advocacy to ensure that people with Down syndrome enjoy these rights.
Moderator: Bret Bowerman –1st Vice President and Executive Board Member, National Down Syndrome
Congress, United States
Inés E. de Escallón – Inclusion International, Colombia, “The Right to Decide: Making it Work for Families”
Gün Bilgin – President, Down Türkiye Down Sendromu Derneği, Turkey, “Where It All Starts; The Family”
Martina Fuga – CoorDown, Italy, "What is the Future for People with Down Syndrome? The Importance of
Becoming an Adult: the Experience of CoorDown and the Project “Casa al Sole."
Prof. Monica Cuskelly – Associate Professor, School of Education, The University of Queensland, Australia,
“Constructing Futures: The Roles of Family”
Marcus Frank – Senior Expert, McKinsey & Co., Brazil, “Inclusion of People with Down Syndrome in the
Workplace and the Role of Families in the Process”
2:30pm – 2:40pm
Break
2:40pm – 3:40pm
Empowered voices: Self-advocates speak out
CASE STUDIES – Examples of people with Down syndrome who, with the support of their families and others, live
independent lives, choosing where to live and work, who to have relationships with and how to integrate with and
participate in their communities and public life.
Moderator: Lynn Walsh, Co-Chair, NGO Committee on the Family
Shunli Liu (self-advocate), Yonghong Li, Amei Sun – China,“One Day, One Change”
Julian Escallon (self-advocate) – Canada, “A Passionate Life with Creative Supports”
Shoko Kanazawa (self-advocate) – Nationally recognized calligrapher, Japan“Live Together”
Sara Weir & Sara Wolff (self-advocate) – President, National Down Syndrome Society, and NDSS self-advocate,
United States “ABLE Act is Now the Law of the Land – What Does This Mean for the Futures of All People with
Down Syndrome in the United States”
3:40pm –3:50pm
Closing Session
New York State Senator Kathy Marchione – A Word of Thanks for Families
Jessamy Tang, Down Syndrome International – Closing Remarks
WDSD Global Video Event ‘My Opportunities, My Choices’ – presented by Down Syndrome International
Sponsored by
The permanent missions of Australia, Brazil, India, Iran, Japan, Republic of Korea,
Poland, Qatar and Singapore to the United Nations, UN Department of Economic and
Social Affairs/DSPD, UNICEF, International Disability Alliance and Inclusion
International. Organized by Down Syndrome International.
World Down Syndrome Day Conference Organizing Committee
Mesbah Ansari, Al-Anoud Qassim Al-Temimi, Rosangela Berman Bieler, Andrew Boys,
Larissa Schneider Calza, Teo (Won-Seok) Choi, Vladimir Cuk, Ines de Escallon, Fred
Doulton, Shoko Haruki, Mayank Joshi, Naomi Koruda, Gabrielle Krasowski, Adele Li,
Gopal Mitra, Balbir Singh (Dsi WDSD Committee Chair), Jessamy Tang (Conference
Chair), Karina Węgrzynowska, Janice Yoon
www.worlddownsyndromeday.org I www.ds-int.org
SPEAKER BIOS
ADELMAN FAMILY – DEVON, SEAN, SUSAN
Devon Adelman is an enthusiastic 12 grader getting ready to graduate high school and embrace post-secondary education. She
is a 3 year Varsity Cheer Leader, docent of the Seattle Aquarium, Special Olympic Gold Medalist, Unified Sports Ambassador
for the state of Washington, active member of Friendship Circle and Young Life, and an committed karaoke singer. She is the
inspiration for “Sam’s Top Secret Journal” series.
Sean Adelman is an Orthopedic Surgeon and the Medical Advisor at Ratchet Health. He is the Author of the “Sam’s Top
Secret Journal” Series and “Trispero”. He is an energetic inclusion advocate and wonderful father to the three Adelman children.
Susan Adelman is currently a University of Washington LEND (Leadership Education in Neurodevelopmental and Related
Disabilities) Fellow in the Family discipline. She graduated from University of Texas Medical Branch School of Occupational
Therapy. She is a tireless advocate for all three of the Adelman children.
E. GÜN BILGIN
President, Down Türkiye Down Sendromu Derneği, Turkey
E. Gün Bilgin holds a Masters degree in Political Sciences from Bosphorus University where she
graduated in 1989 with Honors. She has her license degree from Istanbul University, Faculty of
Political Sciences. She is the founder and managing partner of a private company working in the
pharmaceuticals sector since 1994 and continues to work full time. She is also the President of Turkish
Down Syndrome Association which she calls her second full time job. She has been selected as the
recipient of the Outstanding Achievement Award in 2014 given by Down Syndrome International as a
recognition of her relentless efforts over the past 20 years and the change she has helped create in the
field of Down syndrome. She was born in 1964 and has two sons named Robert Cem, aged 21 and
Daniel Emre, aged 16.
Following the birth of her elder son with Down syndrome in 1994, she became involved in Down syndrome advocacy efforts
with the firm belief that the families are the catalyzer of the change required in the society’s perception towards people with
disabilities. Mrs.Bilgin has, to date, met thousands of families, providing them information and advice for their children with
DS as well as taking part in many seminars and conferences throughout Turkey aimed at increasing the knowledge of educators
and service providers. A short list of her accomplishments include: participating in the Ministry of Education think-tank to
begin integrated education in Turkey, introducing Vojta, Bobath and Sensory Integration therapies to Turkey and providing
education of the first therapists to work in the country, facilitated the establishment of Down Syndrome Clinic of Bilim
University in Istanbul which is the only DS Clinic in the Balkans and the Middle East, and more.
H.E. MS. GILLIAN BIRD
Ambassador and Permanent Resident of Australia to the United Nations
Prior to her appointment, Ms. Bird was Deputy Secretary of Australia’s Department of Foreign Affairs
and Trade from 2004 to 2014. She also served, concurrently, as her country’s Ambassador to the
Association of Southeast Asian Nations (ASEAN) from 2008 to 2013.
A career diplomat with over three decades’ standing in Australia’s Department of Foreign Affairs and
Trade, Ms. Bird held the position of First Assistant Secretary of the International Division, Department
of Prime Minister and Cabinet from 2002 to 2004. From 1999 to 2002, she was First Assistant
Secretary, South and South-East Asia Division. She also served as First Assistant Secretary,
International Organisations and Legal Division from 1997 to 1999. Ms. Bird’s other positions included
Assistant Secretary, Peace, Arms Control and Disarmament Branch from 1994 to 1997, and
Counsellor at the Australian Mission to the United Nations in New York from 1990 to 1993. In addition she was Adviser to
the Office of the Minister for Trade Negotiations between 1988 and 1990.
Beginning her career in 1980, she also held several related positions, including in a short-term mission of the Australian High
Commission in Harare, Zimbabwe, between 1986 and 1987, and as a representative of Australia at the Organisation for
Economic Co-operation and Development (OECD) in Paris from 1980 to 1983.
Ms. Bird holds a Bachelor of Arts from the University of Sydney, Australia, and is a graduate of the French École Nationale
d’Administration. Born in Adelaide, Australia, on 7 June 1957, Ms. Bird is married with one son.
STEPHANIE BOGHEN
Self-advocate, Independent student, Concordia University, Canada
Stephanie Boghen, self advocate, is an independent student studying at Concordia University and
has already successfully completed several courses such as Current Canadian Theatre, Script
Analysis, Art of Managing Your Career, and more. She enjoys acting and has a growing number of
theatre experiences. She has explored improvisation and acting at Loyola Concordia University’s
Centre for the Arts in Human Development where she was involved in a play called “Our World A
Musical Ethnodrama” that was based on culture, backgrounds, religions, and countries. She also has
experience with a travelling acting troupe called Craning Neck Theatre that produced “Trunk:
Oscillator.”
BRET BOWERMAN
1st Vice President and Executive Board Member, National Down Syndrome Congress, United States
Bret Bowerman is 1st Vice President and Executive Board Member for National Down Syndrome
Congress. He also authored “Down Syndrome? Maybe she’ll go to the moon” featured on CNN.com.
In addition to his Down syndrome advocacy efforts, Bret is Co-founder and Managing Director of
Harbour Point Capital (HPC), a healthcare focused private equity firm. Prior to forming HPC, he was
an investment professional with Irving Place Capital, GoldenTree Asset Management, and DB Capital
Partners and also has investment banking and operating experience working for a private equitybacked portfolio company. He currently serves on the Board of Directors of National Surgical
Hospitals, Inc. and Universal Hospital Services, Inc.
Bret lives in Larchmont, NY with his wife and four children. His daughter, Ellie (6), has Down
syndrome. He received his Bachelor’s degree from Washington & Lee University and his MBA from Wharton School of the
University of Pennsylvania
ANDREW BOYS
Director, Down Syndrome International
Andrew Boys has been the Director of Down Syndrome International since the launch of the DSi
secretariat in 2009 in the UK, working with DSi’s Board of Trustees to establish a global membership
network in 140 countries, promoting the inherent right of people with Down syndrome to be accepted
and included as valued and equal members of their communities.
For the last 6 years, Andrew has led DSi’s World Down Syndrome Day campaign, including the global
sharing website www.worlddownsyndromeday.org, WDSD global video event and the successful
WDSD Conferences following the UN General Assembly resolution (passed in December 2011)
officially recognising WDSD on 21 March each year.
Andrew established DSi’s “Reach Out” outreach training programmes to enable people with Down syndrome facing limited
life opportunities, their families and those who live and work with them, to access expert advice, information, support and
resources, with successful projects taking place in Tajikistan and Oman in 2013 and 2014 respectively.
In a former life Andrew was a chartered surveyor in London. Andrew’s younger brother Alex is a motivated, independent
young man …he also has Down syndrome.
DULGUUN BYAMBADORJ
Self-advocate, Mongolia
Dulguun is 20 year-old self-advocate from Mongolia, who dreams to become a part of a dynamic
working team and study English. He attended special secondary school No.25 for disabled children
in a capital city, where he had some occupational training, and where he met most of his friends. But
the basic general education has been given to Dulguun at home. He learned to read perfectly at the
age of four, since then he has read about 200 books. Dulguun has amazing memory in event timing
and chronology, can recite classical Mongolian poems. Currently he’s studying with Tibetan teacher.
Dulguun is an active member of Down Syndrome Association Mongolia since its establishment in
2008.
MARIELLA V. CASTILLO
Tutor/Facilitator, Access Centre for Students with Disabilities (ACSD), Concordia University, Canada
Mariella Castillo holds a BA in Human Relations as well a double minor with a concentration in law
and society, and politics from Concordia University. Her primary areas of coaching are organization
development, human relations, systems thinking, situational leadership, law and politics. She also
oversees operations of the project, Empowering adults with Down syndrome to pursuing Higher
Education. She is the Founder and Director of the Multidimensional Organization By The Way
(B.T.W), a non-profit organization whose main focus is accessible education for adults with Down
syndrome. She was requested to be a panelist during the Employment Workshop “Ready, Willing
and Able” for the Association du Québec pour l'intégration sociale (AQIS) in Montréal, Québec. Ms.
Castillo has written and lectured widely on all aspect of social justice and equality. Her work has
being published in a peer-reviewed journal for the Canadian Centre for
Ecumenism - N°188 and her forum report by the Canadian Association for Community Living. She is a member of the Decision
Science Institute (DSI) and the National Women’s Liberal Commission. Over a long volunteering history, she has served as a
volunteer for the Miriam Center Foundation, Concordia Model United Nations (CONMUN), the Social Justice Committee of
Montréal, the Centre de recherché interdisciplinaire sur la violence familiale et la violence faites aux femmes (CriViff) and
Project Montréal.
ERDENECHULUUN CHULTEM
Founding Member, Down Syndrome Association Mongolia (DSAM)
Mrs Chultem Erdenechuluun is a Founding Member of Down Syndrome Association Mongolia
(DSAM). She has been actively involved in all activities of DSAM including raising awareness on
Down Syndrome in Mongolian society, management, cooperation with related local and overseas
organizations, program and project development, translation and publications of handbooks and
guidelines for parents, organization of seminars and trainings for families and professionals, etc.
Ch.Erdenechuluun served as non-paid full-time Executive Director of DSAM for a long time since
its establishment in 2008, then passed her duties on with a purpose to learn and start meaningful,
developing programs for young adults with Down Syndrome..
MONICA CUSKELLY
Associate Professor, School of Education, The University of Queensland, Australia
Director, Down Syndrome Research Program
Monica Cuskelly is Associate Professor in the School of Education at The University of Queensland.
She has been the Director of the Down Syndrome Research Program (DSRP) for 13 years. The DSRP
was established in 1977 and has conducted research on a range of issues relevant to the lives of
individuals with Down syndrome and their families. One of the central aspects of the DSRP is a
longitudinal study which has followed individuals with Down syndrome from infancy and early
childhood until the present, when these individuals are in their 30s and 40s. The team that comprise
DSRP has received grants from the National Medical Research Council, the Australian Research
Council and other funding bodies for a range of projects over the years of its existence. In recent
years, the longitudinal study has primarily been supported by the Michael Cameron Fund.
Dr Cuskelly has published 3 edited books, one monograph, and more than 100 chapters and peer reviewed articles.
INES ELVIRA DE ESCALLON
Inclusion International, Colombia
A Microbiologist and Biochemist by training, the birth of Ines’ third child, Julian in 1987 mobilized
her to create the Corporación Síndrome de Down in Bogotá, Colombia in 1988, which she directed
for the next 16 years. From 2000 to 2002, she was elected as a member of the District Council for
Persons with Disabilities, in Bogota, representing people with intellectual disabilities. In 2003, she
became involved with the work of Inclusion International (II), supporting the Global Report on
Poverty and Disability, "Hear Our Voices" in 2006, as well as coordinating the World Reports on
Inclusive Education, "Better Education for All When We’re Included Too" in 2009; Living and Be
Included in the Community, "Inclusive Communities = Stronger Communities" 2011, and the Right
to Decide "Independent. But not Alone " in 2014.
She continues to support initiatives in the areas of Family and Self-Advocates, Inclusive Education, Community Living and
Legal Capacity; as well as aspects of membership, organization of international events and projects with special emphasis on
the Americas.
JULIE DUFF
Trustee, Cheshire Down Syndrome Support Group, United Kingdom
Julie Duff is a Trustee and volunteer for Cheshire Down Syndrome Support Group (CDSSG). During
this time, CDSSG has grown from supporting 10 families to supporting over 150 families and
professionals working with children with Down syndrome. She is passionate about her work within
CDSSG to unlock the potential of children with Down syndrome via empowerment of parents and
challenging boundaries. From personal experience, she saw the value of using Makaton signing and
is the Makaton champion for the charity. Her other key responsibility within the charity is to increase
awareness of Down syndrome within the Cheshire Community. Prior to her involvement with
CDSSG, she was a Management Consultant specialising in Human Resources. Julie is the mother of
two active boys. Cameron, 13, and Joshua, 8, who has Down syndrome.
JULIAN ESCALLON
Self-Advocate, Canada
Born in Colombia, Julian moved with his family to Canada when he was 15. He graduated from
Marshall McLuhan Catholic Secondary School in 2008 where he received the Christianity in Action
Award 2007/2008, and on graduation the Council for Exceptional Children `Yes I Can Award` 2008
(Employment Category).
Volunteer opportunities provided Julian with the desire to work, to become a leader and to help
others. After 5 years of work as a part-time associate with Maple Leaf Sport and Entertainment, in
2013 he received the 5 years award from MLSE that identifies him as an employee who excites every
fan, inspires people at his job, is dedicated to the teams and is a leader in the community; values that
describe him as the person he is.
Through his work today Julian is sharing his life, dreams and passions as an entrepreneur, valued employee, leader and musician
who inspires others to realize the incredible opportunities that present themselves by following your
passions. http://hub.partnersforplanning.ca/Videos/13302/julian-escallon-a-man-of-many-passions
Julian builds from his life, his opportunities and examples from others to bring messages of hope and achievements to others
like him who struggle to be recognized as valued citizens. http://www.tulipanproductions.com/
RHONDA FARAGHER
Learning Sciences Institute Australia, Faculty of Education and Arts, Australian Catholic University, Australia
Rhonda Faragher, PhD, is an academic working in the field of inclusive education and is currently
with the Learning Sciences Institute Australia, Faculty of Education and Arts, Australian Catholic
University. She is also Vice-Chair, International Association for the Scientific Study of Intellectual
Disabilities Down Syndrome Special Interest Research Group and was adjunct professor, Simon
Fraser University. She has taught mathematics from early childhood to tertiary level and her research
and teaching is based on the premise that all learners can enjoy and be successful at mathematics.
She is the author of a number of publications, including an editor of the recent book, ‘Educating
Learners with Down Syndrome’ published by Routledge. Rhonda has received a number of awards
for her work, including the Commonwealth of Australia Endeavour Executive Award and the ViceChancellor’s Teaching Excellence Award from James Cook University.
RUTH FARAGHER
Self-advocate, Australia
Ruth Faragher is a self-advocate from Australia. She is in her final year of secondary schooling, having
been educated in inclusive settings throughout primary and secondary school. She intends to pursue a
career in childcare. Ruth is the recipient of a number of awards including an Audrey Fagan Young
Women’s Enrichment Grant and a commendation in the Emerging Young Leaders awards from the
ACT government, Australia.
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MARCUS FRANK
Senior Expert, McKinsey & Co., Brazil
Marcus Frank co-authored McKinsey & Co.’s “The value that employees with Down syndrome can
add to organizations”. Marcus joined McKinsey & Co. in 1998 and is responsible for the Public and
Social sector in Brazil. He has extensive experience working with different levels of government and
NGOs in topics such as basic education, healthcare, low carbon economy and sustainable economic
development. Prior to joining McKinsey, Marcus worked at Molten Metal Technology, a start-up
environmental clean-up company in the United States. He has a B.S. and a M.S. in Chemical
Engineering from MIT, where he also worked in renewable energy research at the MIT Energy
Laboratory.
MARTINA FUGA
Board Member, CoorDown ONLUS, Italy
Martina Fuga, 44 years old, was born in Venice and live in Milan. She is the mother of 3 children and
her daughter Emma (10 years) has Down syndrome. She has been involved with the Down syndrome
community since the birth of Emma in 2005, serving associations and collaborating to different
fundraising program. She is a Coordown ONLUS board member and their delegate for communication
and fundraising. She is also a member of the board of AGPD Onlus (Milan Down Syndrome
Association) and president of Pianetadown Onlus (Italian association and online forum for parents,
relatives, teacher of person with Down syndrome.)
Martina graduated from Ca’ Foscari University of Venice in Oriental Languages and Literatures,
specializing in Art History. She is a Contract Professor about Managment of Art and Cultural Heritage, Catholic University of
Milan (Masters degree program) and an art consultant for Ballandi Arts for art documentaries broadcasted on SkyArte. She
has also served as Director for an art exhibition company. Martina founded Artkids, a company that introduces children to the
world or art. She is currently working on a project to integrate people with Down syndrome in museums. Last year Martina
published the book Emma’s Backpack (Lo zaino di Emma) by Mondadori on her experience as mother of Emma. Emma is one
of the 13 protagonist of the film “Dear Future Mom” produced last year for World Down Syndrome Day by Coordown and
Saatchi and Saatchi.
EMAN GAAD
Co-founder, Emirates Down Syndrome Association, United Arab Emirates
Dean, Faculty of Education, and Professor of Special and Inclusive Education, British University, Dubai
Professor Eman Gaad is the Dean of the Faculty of Education and a Professor of Special and Inclusive
Education at British University in Dubai. She advised both governments of Dubai and Abu Dhabi on
inclusion and was appointed regularly as a consultant for UNESCO. She is a sound academic and the
author of Routledge’s ‘Inclusive Education in the Middle East”. A committed advocate for the
educational and social rights for people with disabilities, she co-founded one of the largest NGOs in
the UAE, Emirates Down Syndrome Association (EDSA) where she also acts as Senior Educational
Consultant. She won regional and international awards for her research and advocacy work such as
HH Princess Haya Award for Special Education as best distinguished individual research and the
Global Leadership in Education Award from the Asian Leadership Award Board. She was seconded
for two years as the first Director of Disability Services in Dubai Government’s Community.
Development Authority. A certified EFQM international assessor and senior consultant and trainer, she has been a National
Representative of the World Forum on Early Care and Education since 2007. She is a regular PhD External Examiner who
was appointed in reputed universities in UK, Australia, Malaysia, and lately India. She is also a frequent media figure and a
reputed author among scholars and researchers.
SHOKO KANAZAWA
Self-Advocate and nationally acclaimed calligrapher, Japan
Shoko Kanazawa is a calligraphy artist born in Tokyo in 1985. She started learning calligraphy from her
mother Yasuko in 1990 when she was five years old. She held her first personal exhibition, Shoko
Kanazawa: The World of Calligraphy, at Ginza Shoro Gallery in 2005, when she was twenty years old.
Shoko also held personal exhibitions at several temples including Kenchoji temple in Kamakura,
Kenninji temple in Kyoto and Todaiji temple in Nara. Shoko's works include the title calligraphy of a
historical TV drama series, “Taira no Kiyomori”, broadcasted on NHK in 2012. She had her calligraphy
performance at Kumano Taisha Shrine. In 2013, the Shoko Kanazawa Museum was established in
Ginza, Tokyo. Additionally, she held a solo exhibition at Chuson-ji Temple and had a calligraphy
performance at Itsukushima-Jinja Shrine. Last year, she did a calligraphy
performance at the opening ceremony of the Japan National Gymnastics Meet. Furthermore, she then transcribed a poem
written by the emperor of Japan commemorating this event – which is now a monument.
Shoko is one of the most noted young calligraphers today.
YONGHONG LI
Teacher, China
Yonghong Li is the mother of Shunli Liu. She works as a teacher. At the current stage, she worries
about Shunli’s financial management, marriage and health problems the most.
SHUNLI LIU
Self-Advocate, China
Self-advocate (China). Born in October 1993, Shunli Liu starred in a Chinese feature film, ONE DAY, in
June 2013. He is now working in a bakery named Auspicious Phoenix. He loves playing basketball and
dreams to be a successful baker.
ANDRZEJ MALEC
Poland
Andrzej Malec was born in 1959 in Warszawa, Poland. In 1978 he started his study at the Central
School of Planning and Statistics ( economic university ) in Warszawa at the Foreign Trade Faculty. In
1985 he started his first job in a Polish Foreign Trade Enterprise as a Trader. He transitioned to finance
in 1991 and has been Financial Director for the past 20 years for two German companies.
His interest in the Down Syndrome issue is of course resulting from the fact, that his son Marcin has the
additional 21st chromosome. Together with his wife Urszula he was deeply involved in the education
and supporting of their son Marcin, to enable him to live a quite normal life.
At the WDSD Conference he will be the support for his son Marcin and in his presentation he will describe, how the early
activity of parents can have positive impact on the development of a child with a Down Syndrome and support it in its later
integration with the surrounding “normal” community.
MARCIN MALEC
Self-Advocate, Poland
Marcin Malec was born in 1984 in Warszawa, Poland. After completing a special primary school, he
continued his education in a secondary special trade school finishing two specializations – gardener and
cook. At the age of 21, thanks to the initiative of the Polish organization Centrum DZWONI, he was
one of the first people with Down Syndrome in Poland to receive the opportunity to work in a free
market. After almost 10 years he is still a happy worker of SODEXO, working in the distribution
department of this catering-company.
In 2007 Marcin was “the face” of the International Conference Europe in Action 2007 with the core
topic “Citizens’ rights for all”, which was held in Warszawa. As a teenager Marcin liked to ride horses
and skiing. In recent years he moved more to trainings in a fitness-club and he attends to bowling-trainings. Nevertheless his
previous interest in traveling and visiting foreign countries realized with his parents and her younger sister Ewa is still of vital
concern. He is a fan of winter sports like: ski jumping, biathlon and cross-country skiing and of course football and recently
also American football, which he could observe directly in the new National Stadium, by accident his actual working place.
KATHY MARCHIONE
New York State Senator, 43rd District, United States
Kathy Marchione was first elected to the New York State Senate in 2012 and was overwhelmingly reelected in 2014. In 2014, and again in 2015, Senator Marchione sponsored a popular, bi-partisan Senate
legislative resolution asking Governor Andrew Cuomo to memorialize March 21 as “Down Syndrome
Awareness Day” in New York State in conjunction with the observance of “World Down Syndrome
Day.” Senator Marchione continues her efforts to help raise greater public awareness of, and promote,
World Down Syndrome Day in her district, and all across New York State. Senator Marchione has been
a lifelong advocate of this important cause, and has continually sought to raise both awareness and
funding. Senator Marchione's great-nephew, Nathan, has Down Syndrome and is one of the bright,
shining lights of her life.
ASHLEIGH MOLLOY
President, TransEd Institute and Adjunct Professor, York University, Canada
Dr. Ashleigh Molloy is an energized and motivated leader with a Ph. D in Education with a focus on
Disability, Diversity and Special Needs Education. He is currently the President of the TransEd
Institute, adjunct professor with York University, author of numerous articles and an internationally
renowned workshop presenter who has appeared on both radio and television. He has devoted himself
to building a community that includes ALL and is focused on driving innovation and delivering
measurable results towards managing a sustainable transformation in education worldwide. He is first
and foremost a devoted father. His daughter Lindsey who lives with down syndrome continues to inspire
and motivate him in promoting inclusion.
His career roles have included experience as teacher, education consultant, principal and board-wide administrator within the
publicly funded school system. In his previous position as a Coordinator, he applied his vision of equity among diverse cultural
groups in the city by organizing an annual international education symposium for secondary level students as a means of
building bridges of understanding and respect for differences. He facilitated staff training at numerous universities, served as
keynote speaker and presenter at multiple conferences, and been awarded numerous awards from organizations around the
world. He was a speaker at the World Down Syndrome Congress in Singapore (2003), Vancouver (2006), and Dublin (2009).
Furthermore, he has won numerous awards
H.E. MR. OH JOON
Ambassador and Permanent Resident of the Republic of Korea to the United Nations
Ambassador Oh Joon is a career diplomat who has served the Republic of Korea in various posts. He
was appointed as Ambassador and Permanent Representative of the Republic of Korea to the United
Nations in New York on 20 September 2013. Prior to this position, he was Ambassador of the
Republic of Korea in Singapore from 2010-13 and Deputy Minister for Multilateral and Global Affairs
in the Ministry of Foreign Affairs and Trade in Seoul from 2008-10.
From 2005-2007, he was Ambassador and Deputy Permanent Representative at the Permanent
Mission of the Republic of Korea to the UN. He served as Chairman of the United Nations
Disarmament Commission for the 2006 session and represented the Republic of Korea in many
meetings of the UN bodies. During the Korean presidency of the 56th session of the UN General Assembly from 2001-2002,
he worked in the President’s office as Deputy Chef de Cabinet.
From 2003-2005, he was Director-General for International Organizations at the Korean Foreign Ministry. During this time,
he also chaired the Missile Technology Control Regime.
He joined the Korean Ministry of Foreign Affairs in 1978 and has served as Special Adviser to the Foreign Minister; Minister,
ROK Embassy in Brazil; Deputy Director-General for Policy Planning; Counselor, ROK Embassy in Malaysia; and Director
United Nations Division. The ROK Government awarded him an Order of Service Merit twice, first the Order of Green Strips
in 1996 and Order of Yellow Stripes in 2006.
He received a Master’s degree in International Policy Studies from Stanford University; a diploma in International and
Comparative Politics from the London School of Economics and Political Scient; and a Bachelor’s in French literature from
Seoul National University. He was also a visiting scholar at Hoover Institution, Stanford University.
H.E. MR. GUILHERME DE AGUIAR PATRIOTA
Ambassador and Deputy Permanent Resident of Brazil to the United Nations
Guilherme de Aguiar Patriota is a Brazilian Career diplomat since 1983, currently serving as Deputy
Permanent Representative to the United Nations, posted in New York for the second time.
He worked mostly with regional and multilateral institutions such as the Organization of American
States, Mercosul, the WTO and the World Intellectual Property Organization. He also served for
three years in New Zealand. His main dossiers at the Foreign Service included economic
development and trade, regional integration, scientific and technological diplomacy, information
society and social issues.
He was, until August of 2013, deputy advisor on international affairs to President Dilma Rousseff.
MONY TERI PETTIT
Founder/Managing Director, Penny Aika Down Syndrome Foundation, Tanzania
Mony Teri Pettit is the founder/managing director, Penny Aika Down Syndrome Foundation, a notfor-profit organization registered in Tanzania. Mony started the Foundation in 2011 after a 15 year
career as owner/director of private school EDP Royal. EDP Royal was comprised of a Pre-School,
Primary & Secondary school where some pupils/students with learning disabilities were included at
all levels, something which is hardly practiced in any private school in Tanzania. Mony has great
passion in advocating for the rights and welfare of people with learning disabilities. As a current
resident in the UK, Mony is actively involved with a Charity (Kent Parents and Carers Forum) as a
steering committee member and does clerking services to school governors.
Prior to running the schools, Mony worked for PLAN International - Tanzania, Eastern & Southern Africa Research Programme
(ESAURP), and Eastern Africa Publications Ltd (EAPL). Mony Teri Pettit was born and raised in Moshi, Tanzania (the land
of Mt. Kilimanjaro). She went to elite schools, Ashira Girls Secondary and Tambaza High School, prior to obtaining her
Bachelor of Science (with Education) degree at University of Dar-es-Salaam, Tanzania. She is married with three daughters,
the youngest Penny Aika (20) has Down syndrome.
DEBENDRANATH SARANGI
Chief Secretary to the Government of Tamil Nadu (Retire), India
Sarangi was in public service for 35 years and retired as Chief Secretary to the Government of Tamil
Nadu, Indian Southern State and following his retirement he briefly served as Advisor to the
Government. He joined the Indian Administrative Service (IAS) in 1977 and over the years, he held
important and strategic positions involving decision making in sectors like housing & urban
development, micro, small & medium industries, transport including urban transport solutions,
Forest & Environment, youth welfare & sports development, labour management and welfare.
Through his of Labour management & Labour Welfare experience he ran non-formal education
networks.
Sarangi received his Master of Arts in Political Science from the University of Delhi and his
Master of Science in Social Development and Planning from the University of Swansea, UK
AMEI SUN
Manager, Huayi Brothers Foundation, China
Amei Sun is the manager of Huayi Brothers Foundation as well as the initiator and producer of a
feature film, ONE DAY.
Since the end of 2010, she has been in charge of the philanthropic projects of Huayi Brothers
Foundation in China. Her mission is to improve the opportunity for the Chinese impoverished
children to see great films for free. Every year, she spends half of her working time in screening
films for children in rural areas. During the film screening, a thought came to her that she would like
to make a film for these children. From the beginning of 2012, Amei have started to raise funds for
the film, ONE DAY. It took 900 days for her to finish the film production. ONE DAY was directed
by 9 promising directors, and starred by 12 well-known Chinese actors and actresses without
remuneration, and supported by 500 people continually. On the first day of its official
release, 284,000 people went to cinema to see this film. Created with innovative concepts and impressive stories, ONE DAY
changes the public opinions towards disadvantaged children.
Amei was chosen to receive the Netease Attitude Award and make a speech in TED x Ningbo. By March 2015, ONE DAY has
been invited by 10 international film festivals, which provides the opportunity for more people in the global to see this film.
JESSAMY TANG
Trustee, Down Syndrome International, United States
Jessamy Tang serves on the Board of Trustees of Down Syndrome International and the Board of
Directors for The Matthew Foundation. She has been involved with the World Down Syndrome Day
Conference at United Nations Headquarters since its inception and currently serves as Chair of this
WDSD Conference Organizing Committee (2013 - 2015). She has been involved with the Down
syndrome community since the birth of her son, who has Down syndrome. She is an avid believer
that those with Down syndrome should have the opportunity to develop to their full potential. She has
led or been involved in numerous fundraisers which support different Down syndrome organizations
such as The Matthew Foundation, LuMind Foundation and ACDS (formerly Association for Children
with Down Syndrome). These fundraisers have 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.
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. She was President and General Manager of ESPN and Radio Disney
stations in Pittsburgh where 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 & CEO of the first ESPN-affiliated media outlet in Boston, Massachusetts before
the birth of her first child, Matthew, who has Down syndrome. 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.
MEGAN TUCKER
Programme Specialist, UNICEF
Megan Tucker works as a Programme Specialist - Children with Disabilities in the Disability
Section, Programme Division at UNICEF Headquarters in New York. As part of the Disability
Section’s mandate, her work involves providing technical support to strengthen disability inclusion
across UNICEF’s programmes. Prior to joining UNICEF, Megan was the Disability Advisor at Plan
International in Australia where she established a disability inclusive development capability
including developing strategic direction and providing technical support to development and
humanitarian programmes. Megan has worked in Programme Management at Plan International in
Australia and CARE International in Vietnam across a range of sectors including livelihoods,
nutrition, WASH, HIV and sexual reproductive health. Megan’s experience includes work in
Vietnam, Timor-Leste, the Philippines and Indonesia.
Megan has a Masters of Social Science (International Development) from the Royal Melbourne Institute of Technology,
Australia and Bachelor Degrees in Arts (Anthropology) and Science (Genetics) from the University of Melbourne, Australia.
LYNN WALSH
Co-Chair, NGO Committee on the Family, United States
Lynn R. Walsh teaches sociology and psychology courses at the University of Bridgeport, with an
emphasis on the family. She serves as Director of the Universal Peace Federation's Office of
Marriage, Family and Human Development. Her most recent publications are entitled, "Gender
Equality and Women’s Empowerment", published in The Family and the MDGs and
"Intergenerational Solidarity: The Springboard for Societal Well-being" in the Family Futures .
Lynn is the Co-chair of the Committee on the NGO Committee on the Family, NY.
SARA HART WEIR
President, National Down Syndrome Society, United States
Sara Hart Weir, MS, was appointed as the National Down Syndrome Society (NDSS) President in
December 2014, after previously serving as the Vice President of Advocacy & Affiliate Relations
for NDSS since 2012. Weir is responsible for overseeing the mission and administration of the
organization, which is the largest nonprofit in the United States dedicated to advocating for people
with Down syndrome and their families.
Under Weir’s leadership, NDSS was at the forefront of the passage of the landmark and
historical Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, which will create tax
free savings accounts for people with Down syndrome and other disabilities. This significant law is
hailed as the most significant legislation for the disability community since the Americans with
Disabilities Act (ADA), over twenty-five years ago. For Weir, the advocacy surrounding the ABLE Act was a civil rights issue,
as for the first-time ever, it puts a stake in the ground that individuals with disabilities can save money for the future, work, all
while remaining on the necessary benefits that the Down syndrome community relies on.
In 2013, Weir was appointed to a three-year term to the Maryland Commission for Effective Community Inclusion of Individuals
with Intellectual and Developmental Disabilities by Governor Martin O’Malley. Weir currently serves on the Board of Trustees
for Westminster College, President of the Westminster College Alumni Council, and on the National Task Group on Intellectual
Disabilities and Dementia. Prior to joining NDSS, Weir was a Vice President at Faegre BD Consulting, worked for an
international pharmaceutical company, and worked for a Congressman from Kansas. Ms. Weir has a Bachelor of Arts in
Psychology and Political Leadership from Westminster College (Fulton, Missouri) and a Master of Science in Public Policy
and Management from Carnegie Mellon University’s Heinz College. Weir has earned many honors including; the Westminster
College Senior of the Year, the Winston Churchill Award for Leadership and Service, and Coca-Cola Community AllAmerican and the 2014 Westminster College Young Alumni Achievement Award.
Weir's passion of advocating for all people with Down syndrome and their families stems from her friendship with a young
woman, Kasey, who happens to have Down syndrome. Sara first served as a mentor to Kasey over a decade ago.
H.E. MR. BOGUSLAW WINID
Ambassador and Permanent Resident of the Republic of Poland to the United Nations
Boguslaw Winid is Ambassador Extraordinary and Plenipotentiary – Permanent Representative of
the Republic of Poland to the United Nations in New York. He began his professional career in the
Ministry of Foreign Affairs in 1991 in the Department of North and South America.
Between 1992 and 1997, he served as First Secretary and later as Counsellor at the Polish Embassy
in Washington, DC. In 1997, he returned to Warsaw and was promoted to Deputy Director and later
Director of the Department of North and South America. In 2001, he was appointed Deputy Chief
of Mission at the Embassy of Poland in Washington, DC. After returning from Washington in 2006,
he became Undersecretary of State for Defence Policy at the Ministry of National Defence
of Poland. From 2007 to 2011, he served as the Permanent Representative of Poland to NATO in Brussels. Boguslaw has been
undersecretary of state of foreign affairs for consular matters, security, and North American and Middle East policies since
2011.
Bogusław Winid graduated from the Institute of History at Warsaw University. In the years 1988-1989, he studied at Indiana
University, Bloomington, and at the Hoover Institution at Stanford University in 1991. In 1991, he also got his Ph.D. from
Warsaw University. His doctoral thesis analyzed Polish-American relations between 1919 and 1939. It was published and
awarded by the Institute of Political Studies of the Polish Academy of Sciences. Bogusław Winid has written three books and
several articles published in Poland, the United States and Great Britain. He speaks English and Russian.
Bogusław Winid was born in Warsaw on November 3 1960. He is married and has two sons.
SARA WOLFF
Self-Advocate, National Down Syndrome Society, United States
A lifelong resident on Northeast Pennsylvania, Sara Wolff has strived to make her community better
for those with disabilities. AS a senior in high school, Wolff organized the first Buddy Walk® in her
community of Moscow, Pennsylvania. The Buddy Walk® program raises awareness about Down
syndrome in local communities and is part of a national program run by the National Down Syndrome
Society.
Through that connection with the Buddy Walk® Sara became more involved with the National Down
Syndrome Society, where in 2007, she was named to the Board of Directors. In addition to her work
with the National Down Syndrome Society, Sara is also a board member for the local Arc chapter in
Scranton as well as at the Arc of Pennsylvania.
Sara has traveled the country and spoke on behalf of those with developmental and intellectual disabilities while providing a
powerful message on what people who face challenges can achieve. She has worked as a law clerk at O’Malley and Langan
Law Offices in Scranton for many years and also works for Keystone Community Resources in their advocacy offices.
H.E. MR. MOTOHIDE YOSHIKAWA
Ambassador and Permanent Resident of Japan to the United Nations
Ambassador Motohide Yoshikawa, Permanent Representative of Japan to the United Nations, was
appointed
to
his
current
position
in
September
2013.
Before his current appointment, Ambassador Yoshikawa served as Ambassador and Permanent
Representative to the OECD in Paris from 2010. Prior to that, he served as Japan’s first Special
Representative for Afghanistan and Pakistan from 2009-2010, and from 2006-2009 he served as
Ambassador to Spain. Ambassador Yoshikawa also served as Director-General of the Middle
Eastern and African Affairs Bureau of the Ministry from 2004-2006. His previous work with the
United Nations includes serving as Director of the United Nations Policy Division of the Japanese
Foreign Policy Bureau. He was also Visiting Professor at Ryukoku University in Kyoto.
Ambassador Yoshikawa graduated with a degree in Social Sciences from the International Christian University (Tokyo) in
1974, and in the same year joined the Ministry of Foreign Affairs. He speaks Japanese, English, Spanish and French.
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 onward, the Day 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 cooperation throughout the global Down syndrome community. For more information: www.ds-int.org.
NOTES
World Down Syndrome Day 2015
Down Syndrome International
presents interviews of people with Down syndrome from 41 countries
considering their lives, their rights and the role of their families”
Visit: youtube.com/user/dsiwdsd
‘My Opportunities, My Choices’
Langdon Down Centre, 2A Langdon Park, Teddington TW11 9PS, United Kingdom
Reg Charity No. 1091843
Reg Company No. 4327941
T: +44 (0)1392 357554
E: contact@ds-int.org
W: www.ds-int.org