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DSi News November 2014 Issue 01 From Australia Down Syndrome Australia is delighted to congratulate its inaugural Chairman, Mr Angus Graham, on being awarded the Medal in the Order of Australia in the 2014 Queen’s Birthday Honours. Read more… Down Syndrome Australia – News Story From Spain Ángela Bachiller becomes the first councilwoman in Spain with Down syndrome, aſter taking possession of her office at Valladolid City Council. Read more… Down España – News Story From Germany “46/47” a short film by Nadine Heinze and Marc Dietschreit, featuring Daniel, a man in an upside down world with 46 chromosomes, when he should have 47. Read more… Heinze & Dietschreit – News Story Focus on Research Elizabeth Fisher and Victor Tybulewicz talk DSi News readers through the basics of “Working with Mice to Further our Understanding of Down Syndrome”. Read More…Page 6

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  • DSi News

    November 2014 Issue 01

    From Australia

    Down Syndrome Australia isdelighted to congratulate itsinaugural Chairman, Mr AngusGraham, on being awardedthe Medal in the Order of

    Australia in the 2014 Queen’s Birthday Honours. Read more…Down Syndrome Australia – News Story

    From Spain

    Ángela Bachiller becomes thefirst councilwoman in Spainwith Down syndrome, aftertaking possession of her officeat Valladolid City Council.

    Read more…Down España – News Story

    From Germany

    “46/47” a short film by NadineHeinze and Marc Dietschreit,featuring Daniel, a man in anupside down world with 46chromosomes, when he

    should have 47.Read more…Heinze & Dietschreit – News Story

    Focus on ResearchElizabeth Fisher and Victor Tybulewicz talk DSi Newsreaders through the basics of “Working with Mice to Further our Understanding of Down Syndrome”.Read More…Page 6

    http://www.heinze-dietschreit.de/filme/46-47/http://www.sindromedown.net/index.php?idMenu=12&idIdioma=1&bsqFechaIni=&bsqFechaFin=&bsqPalabra=bachiller&int1=1409http://www.downsyndrome.org.au/news/congratulations_chairman_Angus_Graham_OAM.html

  • 11 About DSi

    2 Focus on DSi Representative Member Organisations - Africa

    3 DSi Representative Member Self-Advocate - Africa

    DSi Board Member Interview - Africa

    4 DSi Members News Stories - Turkey

    5 DSi Members News Stories - India

    6 Focus on Research

    9 International Disability News - Revisited

    10 Focus on DSi Activity“Reach Out”

    12 World Down Syndrome Day

    13 World Down Syndrome Congress

    14 DSi Representative Member Organisations

    15 DSi Affiliate Member Organisations

    16 Join our Campaign

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    Contents About DSiWhy DSi News?Down Syndrome International publishes DSi News to provide a regular summary of our activities, news and events for our membersand supporters, but crucially also to provide our members with a way to communicate their activities, news and events with other DSi members,the global Down syndrome community and beyond. DSi aims to represent people with Down syndrome with a single global voice andencouraging international communication and cooperation throughDSi News is one way we do this.

    Down Syndrome International (DSi) is a UK based international charity, comprising amembership of individuals and organisationsfrom all over the world, committed to improving quality of life for people withDown syndrome worldwide and promotingtheir inherent right to be accepted and included as valued and equal members oftheir communities.

    Our members include people with Downsyndrome, parents, family members andfriends, carers, professionals, practitioners,researchers, organisations and people whoare just interested in Down syndromefrom all over the world. We are a UK registered charity based at the Langdon DownCentre, Teddington, the former home of pioneering Victorian Physician Dr John Langdon Down, after whom Down syndromeis named.

    DSi aims to provide information, support andresources to people with Down syndrome,their families and carers, and the profes-sionals who work with them with specificfocus on developing countries, representpeople with Down syndrome with a singleglobal voice and encourage internationalcommunication and cooperation and raiseawareness about Down syndrome and thepotential of people with Down syndrome tobe valued members of their communities.

    InformationDSi disseminates information about all aspectsof Down syndrome including prenatal diag-nosis, early development, education, medicalhealth, social care, employment, aging andhuman rights, through the DSi website, publications, expert panels, World DownSyndrome Congress and other conferences,

    regional bodies and through bespoke out-reach training programmes in developingcountries, all in partnership with nationalrepresentative Down syndrome advocacyorganisations.

    RepresentationTo represent people with Down syndrome,DSi is developing an international Commit-tee of Persons with Down Syndrome tospeak for self-advocates within DSi andworldwide, a committee forum for nationalrepresentative Down syndrome organisationsto contribute to for our key projects and aninternational network for our members topromote their activities and communicatewith others through the DSi website, socialmedia and DSi News.

    AwarenessDSi also promotes World Down SyndromeDay (WDSD) on 21 March each year as a daydedicated to people with Down syndrome.Through our global network, WDSD website,Global Video Event, United Nations Conferenceand other initiatives, DSi raises awarenessabout the potential of people with Downsyndrome, highlighting the desperate livingconditions many endure today worldwide,and giving self-advocates a global platformto speak for themselves on this day.

    Read more… DSi - About Us

    http://www.ds-int.org/about-ushttp://www.ds-int.org/

  • 2

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    From the Sitting Room to an Institution – Profile of DownSyndrome Foundation Nigeria

    Focus on DSi Representative Member Organisations - Africa

    Tucked away in a quiet street in the city of Lagos is Down Syndrome Foundation Nigeria(DSFN), the foremost organisa-tion championing awareness ofDown syndrome (DS) in Nigeria.Established in 2001 as DownSyndrome Association of Nigeria (later becoming a Foundation in 2010), DSFN hascome a long way in affecting thelives of people with DS in Nigeriaand West Africa.

    The organisation was founded by Mrs Rose Mordi, a mother of a young lady with DS, inher sitting room as a support group. The group had only a few members at its inception.Soon, her modest sitting room was not enough for the many families who came for help; a 2 roomed apartment in Surulere was acquired as a resource centre in 2002.

    Today the group has increased to a membership of over 100 persons with DS, 24 staff, 28volunteers, a hostel facility and a health intervention initiative that has to date saved thelives of 18 babies with DS with different health challenges.

    Some of DSFN’s achievements so far include championing a mass awareness campaign in Nigeria’s 36 States and the Federal Capital Territory, Abuja, through seminars, training,publications, walks and media campaigns; the establishment of a vocational training centrefor people with DS; the inauguration of DS chapters in 3 geo-political zones; partneringwith the Government to host major DS events; making sure people with DS register andvote at elections; and acquiring 1 acre of land to build a permanent site for the Foundation.

    From the beginning DSFN has faced huge challenges due to the lack of public knowledge inNigeria of the potential of people with DS. New parents face stigma and prejudice whichcan result in children being hidden from view and worse still suffering physical and mentalabuse, and the health, education and social care professions do not have the expertise orincentive to encourage the positive development and growth of children with DS, makingit very difficult for children to fulfill their potential.

    In spite of this DSFN has made a real impact in changing the public perception of peoplewith DS which has led to many more opportunities and has encouraged self-advocates,parents and siblings to speak out in their communities and bring DS into mainstream society. In the long term, DSFN would like to continue this process so that across Nigeria,people with DS of all ages will have equal opportunities with others in healthcare, education,employment and society.

    Key FactsOrganisation: Down Syndrome Foundation NigeriaLocation: Surelere, Lagos State, NigeriaLeader: Mrs Rose Mordi (President)Work: Advocacy, awareness, vocational training, health interventionPeople Impacted : Over 100 persons with Down syndrome from 30 States aged 1 month- 50

    years and their familiesFurther Information : DSF Nigeria – Website

    From South Africa

    Down SyndromeSouth Africa (DSSA)has been acceptedas a charity in theMomentum 94.7

    Cycle Challenge, taking place onSunday 16 November 2014 in Johannesburg. To ride for DSSA, simply enter the race at Momentum94.7 Cycle Challenge and chooseDSSA.

    By Ahaoma Kanu

    http://www.cyclechallenge.co.za/http://www.cyclechallenge.co.za/http://www.downsyndrome-ng.org/http://www.ds-int.org/

  • 3

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    Talking to Hayley Rehbock

    Vanessa dos Santos

    How did you get involved with DownSyndrome International (DSi) and tell us briefly about your role at Down Syndrome South Africa (DSSA)? After the birth of my son Steven in 1995 I joined the local Down Syndrome Association and in 2003 was elected asthe National Chairperson for Down Syndrome South Africa. This is when I became the representative for SouthAfrica and a board member of Down Syndrome International.

    Briefly explain the aims and goals that DSi wish to achieve?We are working hard in order to achieveour aims and goals, which are to:Provide information by disseminatingthrough various means on all aspects ofDown syndrome including bespoke out-reach programmes, organising the WorldDown Syndrome Day Conference held

    annually at the United Nations and ourWorld Down Syndrome Congress heldevery 3 years;Represent people with Down syndrome bydeveloping our committees for peoplewith Down syndrome and our memberorganisations and consolidating our international network and;Raise awareness through various formsbut specifically the promotion of WorldDown Syndrome Day which gives self-advocates a platform on which to speak up.

    As President of DSi please explain thechallenges faced by DSi as the globalvoice for Down syndrome organisations? Having representative members in certainareas has been a challenge, howeversince the employment of our Directorand Assistant Director our membershipbase has grown significantly. The partici-pation of the current representative members in our various committees isslowly growing and we hope that theywill make use of these committees in thefuture for us to be a truly representativeglobal voice. There is also a strong needfor us to provide high levels of supportand training to organisations in thepoorer regions and accessing funding forour outreach programmes is a high priority.

    What are your main interests within thedisability sector? My passion has been establishing support

    groups and self help groups in the town-ships and poverty stricken areas in SouthAfrica. Another passion of mine is trainingyoung adults with Down syndrome andother intellectual disabilities in self-advocacy and how to start their own self-advocacy groups.

    Have you furthered your education sincebeing involved in the disability sector?I completed my Masters in Philosophy inDisability Studies (MPhil) in early 2011 atthe University of Cape Town. This is a 3-year course, which involved completingseveral modules the first two years and athesis in the last year. My thesis focusedon the employment aspirations of youngadults with Down syndrome and the factors that influence that.

    Please share your fondest most memorable moment since becoming aDSi board member? I’ve been fortunate to have many memorable moments such as visiting theDown Syndrome Association in Libya in2008 and 2009 during an outreach project. Another unforgettable time for me washosting the World Down Syndrome Congress in 2012 in Cape Town and attending the pre-congress one dayworkshop for self-advocates. I felt extremely honoured to have been a part of this.

    Please will you tell our readers aboutyourself.My name is Hayley Rehbock I am 39 yearsold and I am a person who has Down syndrome. I live with my mom Louise and my dog in Cape Town, South Africa. I have a lot of hobbies and I love sport. I often go watch cricket at Newlands

    Cricket ground. My favourite cricketplayer is Dale Steyn. I also love music andKurt Darren who is a South African singer is my favourite. I have also been invited toperform with United by Music who arebased in the Netherlands, this was a bighighlight of my life. I also work at the ToyLibrary at the Children's Red Cross Hospital.

    Explain your involvement in being a self-advocate for Down Syndrome SouthAfrica (DSSA).In 2009 DSSA hosted a self-advocacyworkshop in Cape Town, this workshoptaught me a lot. Self-advocates were selected from each Down syndromegroup across South Africa to attend theworkshop. At the end of the workshop all the self-advocates had to vote for aChairperson and a vice Chairperson forthe self-advocacy programme of DSSA. I was voted the Chairperson and my friend

    Ephraim who has an Intellectual delay was voted vice Chairperson. That is how I become involved with DSSA.

    What projects have you been involvedwith since being the Chairperson ofDSSA self advocacy programme? I am no longer the Chairperson for theDSSA self-advocacy programme, a newChairperson was voted in 2013. When I wasChairperson I had a lot of opportunities torepresent DSSA. I took part in the 2012World Down Syndrome Congress whichwas hosted by DSSA in Cape Town. I alsoattended all the DSSA AGM's as I was aboard member. I also provided feedbackfor all the other board members on theself-advocacy programme. I also repre-sented DSSA at various meetings andworkshops.

    Down Syndrome South Africa – Website

    DSi Representative Member Self-Advocate - Africa

    DSi Board Member Interview - Africa

    http://www.downsyndrome.org.za/http://www.ds-int.org/

  • 4

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    DSi Members News Stories

    “Down Syndrome Research and Practice Center” hasstarted its operations in Şişli Florence NightingaleHospital Research and Practice Center, Istanbul,Turkey. The protocol for the first Down syndromehealth clinic in the Balkans and the Middle East dedicated to people with Down syndrome is signedas a joint project of Istanbul Bilim University andDown Türkiye Down Sendromu Derneği.

    Down syndrome has become one of the main focalpoints of Şişli Florence Nightingale Hospital as a result of cooperation between two institutions,both leaders in their areas in Turkey. With this new

    establishment, comprehensive health care services, medical examination and therapies, and rehabilitation services will be offered to people with Down syndrome both nationally and interna-tionally with the aim of helping to improve physical and mental healthand life quality for individuals with Down syndrome.

    Families with children with Down syndrome are delighted with the openingof the clinic which will fulfil a great need in Turkey and also in the region.That health care needs of children and adults with Down syndrome will be met by health care providers specialised in the subject is one of the significant features of the clinic.

    The services in the clinic will be offered under the social security systemand in accordance with the regulations of Turkish Social Security Institution.

    The Rector of Istanbul Bilim University, Prof.Dr. Çavlan Çiftçi said, “Practicing medicine is not only a profession but also a responsibility for thegood of all mankind.” The Rector also stated that as the first universitydedicated wholly to health sciences in Turkey, they are “honoured to breakground by establishing the Down Syndrome Research and Practice Center in cooperation with DownTürkiye Down Sendromu Derneği” and it is their duty to offer medical examinations, therapies and rehabilitation services to individuals with Down syndrome with specialist physicians available withintheir institution.

    Mrs Gün Bilgin, the President of Down Türkiye Down Sendromu Derneği, stated that this clinic wouldbe a milestone in their quest to solve the current problems of meeting health care needs of childrenand adults with Down syndrome and she hoped to see it become a centre of excellence in the region in a very short time.

    The sole purpose of this cooperation and all the studies and research that will be made under the roof of this clinic is to improve life quality for individuals with Down syndrome. Regarding thecommunication and interaction process, it is essential to give updated and realistic information tofamilies who apply to the clinic with questions about Down syndrome (during pre-pregnancy, pregnancy and postnatal periods) in a positive and sensitive manner and respecting the decisions of the families.

    The clinic, which bears great significance as the first health clinic dedicated totally to individuals withDown syndrome in the Balkans and the Middle East, started its operations upon a signing ceremonyheld in Şişli Florence Nightingale Hospital conference hall with the participation of Prof.Dr. ÇavlanÇiftçi, Rector of Republic of Turkey Istanbul Bilim University and Mrs Gün Bilgin, President of DownTürkiye Down Sendromu Derneği.

    Down Türkiye Down Sendromu Derneği - Website

    First Down Syndrome Health Clinic in the Balkans and Middle East Opens

    DSi Representative Member Organisation – Down Türkiye DownSendromu Derneği

    http://www.downturkiye.com/http://www.ds-int.org/

  • 5

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    DSi Members News Stories

    Indian Documentary Filmmaker Pavitra Chalam Wins Outstanding New Asia Pacific Documentary Talent AwardBANGALORE, MARCH 8, 2014 – The Asia Pacific New Documentary Award for Outstanding New Asia Pacific Documentary Talent at the DocWeek Film Festival, 2014 has been awarded to Pavitra Chalam, a film-maker from Bangalore for her film 'Indelible' - a feature documentary on the lives of 7 people with Downsyndrome living in India.

    This award celebrates works from some of the hottest new docu-mentary talent in the region. The aim is to support, connect andempower people and documentary filmmakers in the Asia Pacificregion.

    A proud moment for India and Indian documentaries. ‘Indelible’was selected unanimously among the 10 films in the category, including The Last Impresario by Gracie Otto and Gardening withSoul by Jess Feast. The festival had over 250 film nominations andsubmissions of which only 10 were chosen for the final screening.

    Jury President and Head of Pacific and Mekong-ABC International,Domenic Friguglietti said, “It was a wonderful opportunity and adifficult task for the Jury to assess which filmmaker from the AsiaPacific region was able to best articulate their creative vision andpotential. In short, all of the films demonstrated the craft of documentary at its finest. Reaching a recommendation was one ofthe hardest deliberations I have been involved with as the qualityof the films was so high. In the end, the Jury was unanimous in itschoice of Blush of Fruit for the F4 prize and Indelible to take out theAsia Pacific Award. Both are great films and a solid foundation forthe Asia Pacific New Documentary Program.”

    'Indelible' – (Produced by the Down Syndrome Federation of Indiaand CurelyStreet Media) India’s first official film on Down syn-drome, was screened at the DocWeek film festival in Adelaide, Aus-tralia as part of the Asia-Pacific New Documentary Program. This

    screening, which was the Asia Pacific premiere of the filmwas held on March 6th at the Mercury Cinema in Adelaide. 'Indelible' was the only film from India at the event.

    “We are deeply honoured and profoundly grateful to be able tobring this very important story to the world. 'Indelible' haschanged our lives, and we thank our 7 heroes for trusting us withtheir stories. We hope that this film will help change the way peo-ple look at those living with Down syndrome. Our dream is thatthey will have the opportunity to lead their lives with the dignity,respect and rights they deserve. We thank everyone at DocWeek,the jury and the Down Syndrome Federation of India for this op-portunity. I believe that there is justice in having fought for socialcauses through the medium of film for 10 years, and this justmarks a new beginning in that journey.“ says Pavitra. Pavitra is agraduate of the New York Film Academy and has made films on awide array of sensitive social issues ranging from drug addiction tomental illness for close to a decade.

    “At its heart, ‘Indelible’ is a story of hope and a tribute to thehuman spirit” says Pavitra. Set amidst the beaches and by-lanes ofChennai, India, ‘Indelible’, discovers 7 heroes and their families,bound together by an extra chromosome. Babli, Revathi, Arti,Manimeghalai, Archana, Sandhya and Ashwin invite us into theirhomes and hearts to witness everything that text-books andWikipedia left out. What are people with Down syndrome reallylike? How do their families cope? What of their dreams and beliefs?Through these stories, we witness a magical world and an unlimitedcapacity for love and courage.

    CurleyStreet Media - the production house behind this film released a short version of the film in August 2012, which won the‘People’s Choice Award’ at the Delhi Shorts International Film Festival. It was also part of the official selection of films at film festivals across the world such as the ‘Picture This Film Festival’ inCalgary, ‘The Thinline Film Festival’ in Texas, ‘The India InternationalFilm Festival of Tampa Bay’ in Florida and the ‘DocuWest Film Festival’.

    The feature version had its worldwide premiere at the SeattleSouth Asian Film Festival (Tasveer) in October last year.

    DocWeek Announcement – News Story

    For details about DocWeek write to :[email protected] / [email protected]

    For more details, write to CurleyStreet Media at: [email protected] or call on or +91 9739189460 or +91 8197421799 .

    Down Syndrome Federation of India - Website

    From Singapore

    Down Syndrome Association Singapore host “Mystique VIII” annual charity gala dinner on Saturday 8 November 2014 at Shangri-La Hotel, Singapore. They will showcase "What a Wonderful World"through the eyes of a person with Down syndrome.

    Read more… Down Syndrome Association Singapore Website

    DSi Representative Member Organisation – Down Syndrome Federation of India

    http://www.downsyndrome-singapore.org/http://www.downsyndrome.in/mailto:[email protected]:[email protected]:[email protected]://docweek.org.au/pages/marketplace/asia-pacific-program/http://www.ds-int.org/

  • 6

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    At first glance, it is not at all obvious how micemight help us understand what is happeningin Down syndrome, but in fact they have beenand continue to be, incredibly important to us.The reason is that Down syndrome is a geneticdisorder, it arises from having 3 copies ofchromosome number 21, and because humansand mice both have roughly the same genesdoing roughly the same things, we can usemice to ‘model’ aspects of human genetic disorders, including Down syndrome.

    Why we work with miceAll mammals have evolved from thesame ancestor many millions of yearsago. There is quite a good fossil recordshowing our early common lineage, andour ancestors were small, furry, and four-legged.

    This means that because we havethe same ancestors, we share the sameDNA and the same genes, we have moreor less the same ‘genomes’ (the term‘genome’ refers to all our DNA, all ourgenes). It is probably only very smallchanges in the instructions given out byour genes that make some of us humansand some of us mice.

    Our mother and our father each giveus 23 chromosomes, so we have 2 pairsof each chromosome and 2 pairs of eachgene (there are some exceptions to dowith the chromosomes that make usmale or female). In the same way, miceinherit a set of chromosomes from theirmother and a duplicate set of chromosomes from their father, and theytoo have 2 pairs of each chromosomeand 2 pairs of genes.

    In Down syndrome, people have anextra copy of chromosome number 21,they are ‘trisomic’ for this chromosomewhich means they have 3 copies of all thegenes on this chromosome, and having 3copies is generally not a particularly good thing. The same is true in mice, having 3 copies of any chro-mosome gives rise to a lot of problems, in fact usually such mice don’t develop properly and are not born alive.

    So, we know that we share genesand genomes with mice, and that for

    humans and mice having 3 copies of a chromosome or 3 copies of a genecan give rise to clinical symptoms, be-cause genes and chromosomes havespent millions of years evolving a finelytuned biology that is based on just having2 copies.

    But before we can think about work-ing with mice to ‘model’ and understandDown syndrome, we need to know oneother fact. The genes that sit in a longline on human chromosome 21 arearranged a bit differently in the mousegenome, they actually form part of 3 dif-ferent mouse chromosomes, number 10,16 and 17. Mice don’t have a chromosome21! We have 23 pairs of chromosomes,mice have 20 pairs of chromosomeswhich are a slightly different shape andsize from ours. But we and mice have thesame set of genes and more or less thesame DNA.

    So, mice: similar genomes to us,similar genes giving out similar instruc-tions to do similar things, with 2 sets ofeach chromosome and 2 sets of eachgene, and for mice as well as humans, it can cause problems to have 3‘doses’ of a chromosome or a gene.

    Working with mice to understand DownsyndromeUsing techniques developed over morethan thirty years, we can alter the mousegenome so that we can increase thechromosome number in a mouse, or increase the ‘copy number’ of individualgenes, including genes that lie on chro-mosome 21 in humans. This means wecan try to work out which genes are

    important for which aspects of Downsyndrome.

    We can do this by going in 2 opposite directions. Firstly from the individual genes, to working out whathappens when they are present in an abnormal dose of 3 copies, rather than 2.Secondly, by starting with an individualcharacteristic of Down syndrome and thentrying to find out which of the chromo-some 21 genes are important.

    Let’s start with the first approach.There is a gene on chromosome 21 whichis called USP16. Sometimes genes canhave interesting and imaginative names.This gene is just called USP16. It gives instructions to cells to switch on, or off,certain biochemical pathways within thecells. It tells the cell to do things. So youcan imagine that if it were present in thewrong dose, in 3 copies not 2 copies, itwould be shouting too loudly, so thewrong messages might get through. Re-cently, scientists in USA discovered that having an extra copy of USP16 may cause certain types of premature ageing, similar to that seen in Down syndrome, so it looks as if USP16is an important gene.

    Now let’s take the second approach.Let’s start with a characteristic of Downsyndrome and see if we can find thegenes responsible. People with Downsyndrome have a big advantage over therest of us, in that they appear not to getcertain cancers as frequently as the restof the population. A group in USA workedwith a mouse model of Down syndromethat has 3 copies of part of a mouse chro-mosome equivalent to part of human

    Focus on Research

    Elizabeth Fisher and Victor Tybulewicz

    Working with Mice to Further our Understanding of Down Syndrome

    http://www.imperial.ac.uk/people/v.tybulewiczhttps://iris.ucl.ac.uk/iris/browse/profile?upi=EMCFI97http://www.ds-int.org/

  • 7

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    chromosome 21 (it happens to be mousechromosome 16). They bred this ‘Downsyndrome’ model mouse to a mousestrain that has a high rate of colon can-cer. They studied the progeny mice fromthis cross, and looked at their rates ofcancer, which were much lower than ex-pected. They carried out some more ex-periments and looked at all the genesthat were present in 3 copies and workedout that a gene called ‘Ets2’ is one of thegenes which, when present in 3 copies inDown syndrome, actually sends out sig-nals to cells which are protective against cancer.

    The head of the group that discov-ered this wrote an important scientificpaper telling everyone about the resultsand he said 2 important statements inthe last paragraph of this publication:firstly, that without studying mouse mod-els of Down syndrome it would havebeen impossible to discover that thisgene prevented cancer when it is presentin 3 doses, and secondly that this discov-ery is an important finding for everyoneand it comes from studying Down syn-drome – the study of Down syndrome hasgiven an important scientific result thathelps us to understand and treat cancerin everyone.

    What are we doing?Like every other scientist studying aspects of Down syndrome, we work inan international environment in whichwe collaborate and cooperate with manyother people around the world. Even inour own labs we have scientists frommany different countries contributing tothe research. Currently these countriesinclude Australia, Spain, Romania, andUSA, and one of our researchers isspending time in USA being trained byour colleague Professor William Mobleyof the University of California, San Diego.

    What are we doing? Well, in our laboratories we are doing 2 things.Firstly, we are using some quite fancy genetic techniques to make new mousestrains that are trisomic for small piecesof the mouse equivalent of human chro-

    mosome 21. Then we can look at thecharacteristics of those mice – for example, do they walk around in thesame way as normal mice?, or do theyhave problems with balance?, do theyhave any congenital heart abnormalities?– and if the mice do have any unusualcharacteristics we can say that the genesresponsible must lie in the trisomic regions. This means we can then look atthe map of all the genes on chromosome21 and start to think about which mightbe good candidates for causing the unusual characteristics, and then we canstart investigating these genes – in exactly the same way that the gene related to protection against some formsof cancer was found, above. We are doingthis work with some famous geneticistsin USA including Dr Roger Reeves and DrEugene Yu.

    We’re also taking a second approach.While human and mouse genes are verysimilar, they are rarely completely identical.Also, there are big gaps in between genesthat are composed of DNA sequencesthat are often different between humanand mouse, but which are still important.So we thought that we would make another mouse model of Down syndrome,a mouse that carries an extra copy ofhuman chromosome 21. In this way, wewould be sure to have not only all the

    genes, but also all the bits of DNA betweenthe genes, so we could see what happenswhen these are trisomic, present in 3copies (i.e. the 2 mouse copies plus the 1human copy).

    The first step of the project was togrow some human cells in the lab. To dothis, we simply ordered them in from acatalogue of human cell lines that can begrown in labs. Then we had to movehuman chromosome 21 from the humancell into a mouse cell. It was quite difficultto transfer the human chromosome 21into mouse cells because chromosomesare enormously large molecules and so

    quite difficult to move around. To giveyou some idea, the DNA in just 1 of yourcells, is organised into 46 separate chro-mosomes. In each chromosome, this longthin molecule is very tightly woundaround itself. But if you were to unwindeach chromosome and lay them end toend, the DNA from a single 1 of your cellswould stretch out to 2 METRES!* Chromosomes are pretty amazing.

    Eventually we worked out how to move the human chromosome 21 between cells. So that left us with humanchromosome 21 in some mouse cells.The human DNA still only accounted forless than 1% of the mouse genome, soyou don’t need to worry about horrorstories of creating half human half mouseanimals, because the amount of humanDNA in these mouse cells is tiny. We callthese cells that carry human chromosome21 ‘transchromosomic’ mouse cells.

    The next job was to use the tran-schromosomic mouse cells in some approaches developed over 20 years ago,that allow us to make a mouse from thecells (and a few other cells as well, as ithappens). We did this, and after manyyears of work, 13 years in fact, we produced a new strain of mice call transchromosomic mice, that have all of the normal mouse DNA but also carrymost of human chromosome 21.

    What do the mice look like? Identicalto every other mouse you’ve ever seen.Are they really weird? Well, no, actually.If you saw these mice running around,you’d never know they were any differ-ent from any other mouse. But when welook really carefully at how they moveand we give them a task to do, like balancing on a rod, we see they’re not asgood at balancing as other mice. We canimage the brains of these mice, and thereare some very subtle differences fromother mice. When we look at the hearts ofthese mice, some of them have congenitalheart defects that are identical to the

    http://www.ds-int.org/

  • 8

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    heart defects often found in Down syndrome.

    What does this tell us? It tells usthat the mouse strain does model aspects of Down syndrome, that we canlook more closely at the characteristics ofthis strain and start to learn more aboutwhich genes are responsible for whichfeatures, and we can see if there are anybits of the human DNA between thegenes, for example, which are importantin Down syndrome.

    We do not have expertise in all thedifferent aspects of mouse biology, in thesame way that a doctor doesn’t knowabout all the bits of the body, in detail,but can go to an expert in a particular area, such as bones, or hearts or lungs,for example. So like everyone else, wecollaborate with experts around theworld to understand our mouse modelsand their biology and how this relates tohuman biology and Down syndrome. Wework with a lot of different laboratoriesat any one time, and in particular at themoment we are collaborating with Pro-fessor William Mobley in USA, ProfessorYann Herault in France, Dr Eugene Yu inUSA, and Professor Roger Reeves in USA,as well as other groups in Oxford, Cambridge, London, and elsewhere in UK.

    Mice lead us to treatments for some aspects of Down syndromeThere are treatments for some aspects of

    Down syndrome. Heart defects can be successfully treated by surgery, leukemiacan successfully be treated bychemotherapy. Some people would liketo see if learning and memory can be improved in Down syndrome, so thatpeople can lead more independent lives.Scientists in USA studied mouse modelsof Down syndrome, mice with 3 copies ofa large stretch of mouse chromosome 16, which is equivalent to human chromosome 21. They found outa lot about the biochemistry of the brains of these mice and that a particular chem-ical called GABA, which we all have in ourbrains, was present at abnormally highlevels in the mice. When they gave a drugwhich has been used in humans to helpepilepsy (which also involves this chemi-cal, GABA) it allowed their mouse modelof Down syndrome to learn certain tasksmore easily. The drug did not ‘cure’Down syndrome, which is a collection of different aspects in everyone, but ittackled just one feature, learning andmemory, and improved these in mice. So now the questions are ‘do people with Down syndrome have unusuallyhigh levels of GABA? and ‘will this drughave any effect in improving learning and memory in children with Down syndrome?’ No one yet knows.

    None of this is easy We work with mouse models to under-

    stand Down syndrome, but before we doanything we have to address 2 issues: Isour work ethically correct with respect tostudying Down syndrome? is our workethically correct with respect to usingmice? We do not want to ‘cure’ Downsyndrome, but we do want to understandit in order to make life easier for peoplewith Down syndrome and for the peoplewho love them. To fully understand anyhuman disorder currently we have towork with animals, human or mice. Wejust don’t understand enough about biology to model Down syndrome on a computer or by growing cells in a laboratory, so for now we work withmice under very very strict rules that arestrongly enforced and which make uspersonally liable for prison sentences ifwe break them. This seems right, as miceare, after all, our distant cousins.

    Where are we going, mice and us?Scientists will continue to study mice formany years to come, to understandDown syndrome, but already in the lastfew years mice have given us huge insightsinto the genes responsible for severalaspects of Down syndrome, includinglearning and memory, heart defects,leukemia, cancer, and even the ear infections (otitis media) that are commonin Down syndrome are now being studiedin mouse models. Slowly we are startingto understand which genes are impor-tant, and to try out possible treatmentsfor certain aspects of Down syndrome.This work involves thousands of scientistsin hundreds of laboratories around theworld – some studying Down syndrome,some studying areas related to Downsyndrome research, such as heart devel-opment or diabetes. Most of these peo-ple work with mice as models of humans.

    *So how much DNA is there in the whole ofyou, if you have 2 metres of DNA in a singlecell – roughly, you have 1,000,000,000,000cells in your body. So you have2,000,000,000,000 metres of DNA in yourbody – and yes, that’s enough to stretch fromearth to the moon and back over 8,000 times.Mind blowing.

    http://www.ds-int.org/

  • 9

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    International Disability Alliance Members Active Participants during United Nations High-Level Week on Disability and DevelopmentNew York, 3 October 2013

    The inclusion of the rights of persons with disabilities in the Post-2015 DevelopmentAgenda was debated at the highest level of government during the opening of the UnitedNations (UN) General Assembly from 23-25September 2013. It was the first time in UN history that the rights of persons with disabilitieswere discussed within the framework of theUN political agenda. The International DisabilityAlliance (IDA) and its member organisationswere well represented in a number of high-levelmeetings and side events throughout the week.High-level dignitaries and civil society leadersgathered in New York for the (UN) September23 High-Level Meeting of the General Assemblyon the realisation of the Millennium Develop-ment Goals and other internationally agreeddevelopment goals for persons with disabilities(23 September 2013), and the Special Event towards achieving the Millennium DevelopmentGoals (25 September 2013). In his statement at the opening of the High-LevelMeeting, IDA chair Mr. Yannis Vardakastanisspoke on behalf of civil society, calling on decision-makers at the highest levels to recognisethe importance of mainstreaming the rights of persons with disabilities in the Post-2015 Development Agenda. “Persons with disabilities must stop being receivers of lower levels of education, of higherlevels of unemployment; they must stop beingvictims to a system that lacks accessible trans-portation, healthcare and information services.The post-2015 development agenda must aimto take persons with disabilities out of lower income scales—poverty eradication for personswith disabilities must be fully prioritized,” he said.

    IDA member organisations attending the High-Level Meeting and other events during the week included the Arab Organisation of Persons with Disabilities (AOPD), Disabled People’s International (DPI), Down Syndrome International (DSi), European Disability Forum(EDF), International Federation of Hard of Hear-ing People (IFHOH), Inclusion International (II),Latin American Network of Non-GovernmentalOrganisations of Persons with Disabilities andtheir Families (RIADIS), Pacific Disability Forum(PDF), World Blind Union (WBU), World Federa-tion of the Deaf (WFD), World Federation ofthe Deafblind (WFDB) and World Network ofUsers and Survivors of Psychiatry (WNUSP). In advance of the High-Level week, a declarationon the development and inclusion of persons with disabilities and their families by AOPD andRIADIS, and a statement on the human rights ofpersons with psychosocial disabilities in an inclusivedevelopment agenda by WNUSP were released.IDA calls for a clear recognition of the humanrights-based approach to development andrights of persons with disabilities in the post-2015 framework. This was strongly supportedby two very important reports released in2013: the Secretary-General’s report (August2013) and the report of the High-Level Panel onthe Post 2015 Development Agenda (May 2013).Both documents call for disaggregation of databased on disability and the mainstreaming ofpersons with disabilities in the new developmentgoals. IDA is an alliance of eight global and four regionalorganisations of persons with disabilities. It is a membership-based organisation of personswith disabilities representing a unique and authoritative voice of the world’s largest andmostly overlooked minority group.

    International Disability Alliance - Website

    More Recent IDA ActivityThe 2014 Civil Society CRPD Forum (CSF) “Towards an Inclusive Post-2015 Agenda”,coordinated by IDA in partnership with Disability Rights Fund, Human Rights Watch,International Disability and Development Consortium and Rehabilitation International,provided an opportunity for speakers from UN Member States, UN Agencies andcivil society to present highlights of the post-2015 development framework thus far,and opportunities for future civil society engagement at the national, regional andglobal levels.

    Read more… International Disability Alliance – News Story 10 June 2014

    International Disability News - Revisited

    http://www.internationaldisabilityalliance.org/en/article/ida-press-release-civil-society-crpd-forum-2014http://www.internationaldisabilityalliance.org/enhttp://www.ds-int.org/

  • Focus on DSi Activity

    “Reach Out”

    10

    “Reach Out” is the name for DSi’s outreach training programmes in developing countries.Through “Reach Out”, we provide training and support to professionals, organisations,parents and people with Down syndrome, to empower them to advocate for the right tobasic living standards, medical care, education and acceptance into society, and importantlyallow people with Down syndrome to advocate for themselves.

    DSi in Tajikistan – April 2013In early 2013, DSi received funding from Open Society FoundationsEducation Support Program to undertake an early developmentand education outreach programme in Tajikistan. DSi workedwith its Representative Member Organisation The Public Organisation of Parents of Children with Down Syndrome(SiDa), based in Dushanbe, Tajikistan, who had also receivedfunding for this programme from Abilis Foundation.

    SiDa consists of a small support group of like minded and proactive parents of children with Down syndrome who areworking to bring about change in life opportunities for peoplewith Down syndrome in Tajikistan. Social stigma in Tajikistan results in families of children with Down syndrome hiding themfrom society and this segregation can severely limit early development. A lack of awareness about the potential of thesechildren also prevents parents encouraging cognitive and physical development. At school age, a small, aging teachingcore and a poorly funded education system means that teachersdo not have the skills necessary to include children with Downsyndrome effectively in mainstream schools. SiDa has parentswith children aged 6-12 who are seeking assistance educatingtheir children, some of whom stay at home with no support,some of whom are reluctantly sent to special education boardingschools and very few of whom attend inclusive classes in pilotschemes in Dushanbe.

    An opportunity exists with this proactive parent support group tobring about a change in attitude and skill level in the educationsystem at the local level, which in turn can filter through to thenational level as a new generation of education professionalscome through. But this opportunity should be taken now as this group is made up of parents of young children with Downsyndrome who have the personal motivation to succeed now.

    DSi sent a team to Tajikistan in April 2013, including a consultantfrom Representative Member Organisation Down's SyndromeAssociation (UK), to implement a training programme specificallyfocusing on early development and primary education of childrenwith Down syndrome from birth-11 years. The programme concentrated on the learning profile of children with Down syndrome, developing early communication skills, cognition andplay skills, speech, language, memory, reading, writing, number

    skills, social development, behaviour and good practice in education.

    SiDa invited a number of people to receive training. 25 peopleattended over 3 days, consisting of parents, teachers fromkindergartens, mainstream and special schools, health profes-sionals, people from academic institutions, speech therapists, psychologists, social workers and DSi representatives from disability and education NGO's.

    Following the programme, it is clear that the participants wereseeking practical solutions for assisting the development of children with Down syndrome and there was good feedbackthat our programme gave them this. There was also an agreedunderstanding that going forward, it will be important to workwith SiDa (who are the only organisation in Tajikistan advocatingspecifically for people with Down syndrome) to ensure that children with Down syndrome are given opportunities to developand learn just like every other child.

    Down Syndrome International, Langdon Down Centre, 2 A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    http://www.ds-int.org/http://www.downs-syndrome.org.uk/http://www.downs-syndrome.org.uk/http://www.ds-int.org/organizations/public-organisation-parents-children-down-syndrome-sidahttp://www.ds-int.org/organizations/public-organisation-parents-children-down-syndrome-sidahttp://www.ds-int.org/organizations/public-organisation-parents-children-down-syndrome-sida

  • However, it is also clear both from the feedback and discussionson inclusion and behaviour, that there is a lack of understandingof how to successfully include children with Down syndrome insocial and education settings in order to assist their development.This lack of understanding exists among parents, teachers andother professionals in the education sector, and also the healthand social sectors. Given the lack of practical experience of including people with disabilities in society in Tajikistan, this isnot surprising.

    DSi will work with SiDa to stay in contact with all of the trainingparticipants to examine whether this training programme has apractical impact. We trust that it will and we hope that in turn,the participants will further disseminate the knowledge theyhave gained to others.

    However, we know that much work is needed to make a positivedifference to the lives of people with Down syndrome in Tajikistanand we would like to work with SiDa going forward to achievethis. We believe we can do this through practical training on earlydevelopment of children with Down syndrome, effective inclusionin the classroom and a “train the trainer” programme with individuals from SiDa to build their capacity and enable their organisation to provide practical training and assistance in education and social care settings. The provision of accurateand up to date information, resources and materials translatedinto Russian and Tajik for SiDa could also be part of this programme, as could further capacity building of SiDa in termsof advocacy, self-advocacy, business strategy, regional and international communications, legislation, government lobbyingand human rights.

    DSi will be required to seek external funding in order to progressthese follow up programmes. DSi would like to thank Open Society Foundations for agreeing to work with us and providefunding for our “Reach Out” programme in Tajikistan. A furtherbig thank you must go to all of our supporters worldwide. We

    rely entirely on voluntary donations to support our internationaloffice and all of our programmes, and in addition to very generousdonors, we are grateful to count on the moral support as well asthe knowledge, skills and experience of our global membershipto help us fulfil our mission to improve lives for people withDown syndrome.

    DSi – “Reach Out”

    11

    DSi in Oman – October 2014

    In October 2014, DSi undertook a “ReachOut” outreach training programme for healthprofessionals in Oman with the support ofthe Sultanate of Oman’s Ministry of Healthand UNICEF. Full details of this programmeand its outcomes will be included in the nextedition of DSi News.

    Down Syndrome International, Langdon Down Centre, 2 A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    http://www.ds-int.org/http://www.ds-int.org/reach-out

  • Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    World Down Syndrome Day

    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. We highlighted that:

    1. Having Down syndrome does not make a person unhealthy.2. Down syndrome is a genetic condition, not an illness.3. People with Down syndrome may have health issues throughout their lives, just like everyone else and they

    should have access to healthcare on an equal basis with others.4. There are specific known health issues which may affect people with Down syndrome, for which accurate,

    evidence based information is available.5. Health professionals should be aware of these specific issues when treating a person with Down syndrome.6. Health professionals should not discriminate against people with Down syndrome by:

    • refusing to treat them; • blaming health issues on Down syndrome in general, or;• considering only specific known health issues which may affect

    people with Down syndrome.

    Many of you joined this campaign and adopted it into your plans for WDSD 2014.

    Our WDSD Global Video Event and WDSD Conference held at United Nations Headquarters both explored this importantarea of focus.

    Once again in 2014, we invited everyone across theworld to wear LOTS OF SOCKS on 21 March to getpeople talking about WDSD.

    We announced the 2014 WDSD Awards and manyof you joined us on our various WDSD Social Mediachannels.

    We are busy working on plans for WDSD 2015 andwith the help of our members and the global Down syndrome community, we look forward to creating an even loudersingle global voice advocating for people with Down syndrome on 21 March 2015. Please watch the WDSD Website, DSiWebsite and our social media channels for 2015 announcements.

    Read more…DSi – World Down Syndrome Day

    12

    Down Syndrome International would like to send a big THANK YOU to everyone for creating anincredibly loud voice advocating for people with Down syndrome on 21 March 2014!

    21 March 2014 marked the 9th anniversary of World Down Syndrome Day (WDSD) and each yearthe voice of people with Down syndrome, and those who live and work with them, grows louder.

    DSi encouraged our friends all over the world to choose your own activities and events to helpraise awareness of what Down syndrome is, what it means to have Down syndrome, and howpeople with Down syndrome play a vital role in our lives and communities. We shared 225 eventsfrom 66 countries on our WDSD Website on 21 March.

    “Health and Wellbeing - Access and Equality for All”

    For WDSD 2014, DSi focused on:

    Focus on DSi Activity

    http://www.ds-int.org/world-down-syndrome-dayhttp://www.ds-int.org/

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    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    NAMASTE! Down Syndrome international (DSi) together with hostsDSi Representative Member Organisation Down SyndromeFederation of India is delighted to welcome you to participate in the 12th World Down Syndrome Congress in Chennai, India from 17-21 August 2015. We look forward to welcoming participants from countries across theglobe to meet, share knowledge, experiences and perhaps open new frontiers in improving the lives of persons withDown syndrome.

    The Congress will focus on Panchtatvas - Social Awareness & Self Determination, Health, Education & Employment, Support System, Rights and the Law for People with DownSyndrome. As this a very impor-tant event for the global Downsyndrome community, we areputting together a dynamic scientific and social programmewhich will cater to the needs ofall delegates – including health,education, and research practitioners, policy makers,families and most importantly,persons with Down syndrome.

    The scientific programme willfeature keynote lectures, stateof the art sessions and work-shops by international expertswho will be addressing topics such as social inclusion, rights, education, health and employment. Running in parallelwith this programme, people with Down syndrome and their family members will share their knowledge and experi-ences in concurrent sessions.

    The exciting social programme will include a special dinner exclusively for people with Down syndrome.

    Following on from the WDSC’s held in Cape Town and Dublin, we will continue with the successful and popular interactive workshop for adults with Down syndrome. Called PANCHAYAT, this pre-congress open forum has been developed especially for adults with Down syndrome. It provides a platform for voicing wishes and desires, exchanging ideas, and forming friendships.

    Chennai is a vibrant, colourful, affordable and friendly city with thousands of years of culture and history that willprovide an incredible location for what promises to be a truly unique triennial congress.

    We are now inviting submission of papers and registration for delegates. Please visit our WDSC 2015 Website to register today!

    For more information about Chennai and India, visit the Incredible India Website.

    Dr. Rekha RamachandranPresident Elect: Down Syndrome InternationalChairperson: World Down Syndrome Congress 2015

    Focus on DSi Activity

    World Down Syndrome Congress

    http://www.incredibleindia.org/en/http://www.wdsc2015.com/http://www.downsyndrome.inhttp://www.downsyndrome.inhttp://www.ds-int.org/

  • Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    Albania Jonathan Center

    AustraliaDown Syndrome Australia

    BangladeshDown Syndrome Parents Support Group ofBangladesh (Programe of AMDA Bangladesh)

    BelgiumDown Syndrome Foundation Belgium

    BermudaBermuda Down Syndrome Support Group

    BotswanaDown’s Syndrome Association of Botswana

    CanadaCanadian Down Syndrome Society

    Costa RicaFundación El Futuro es de Todos

    CroatiaCroatian Down Syndrome Association

    Dominica Dominica National Down Syndrome Society

    El SalvadorFundacion Club de Amigos Especiales a Distancia de El Salvador

    FranceTrisomie 21 France

    GeorgiaAssociation of Professionals and Parents ofChildren with Down Syndrome

    Gibraltar (UK Overseas Territory)Down’s Syndrome Support Group Gibraltar

    Hong Kong (S.A.R. China)Hong Kong Down Syndrome Association

    IndiaDown Syndrome Federation of India

    IraqDown Syndrome Association of Iraq (HibaCentre for Down Syndrome)

    IrelandDown Syndrome Ireland

    JamaicaJamaica Down’s Syndrome Foundation

    JordanJasmine Association for Children with DownSyndrome

    LebanonLebanese Down Syndrome Association

    Macau (S.A.R. China)Macau Down Syndrome Association

    MaldivesBeautiful Eyes Down Syndrome Association

    MauritiusDown Syndrome Association Mauritius

    NepalDown’s Syndrome Association of Nepal

    New ZealandNew Zealand Down Syndrome Association

    NigeriaDown Syndrome Foundation Nigeria

    NorwayNorsk Nettverk for Down Syndrom

    PakistanPakistan Down Syndrome Association

    PeruSociedad Peruana de Síndrome Down

    RomaniaAsociatia Langdon Down Oltenia, Centrul Educational Teodora

    RussiaDownside Up

    SingaporeDown Syndrome Association Singapore

    South AfricaDown Syndrome South Africa

    SwitzerlandInsieme 21

    TajikistanPublic Organisation of Parents of Childrenwith Down Syndrome "SiDa"

    TurkeyDown Türkiye Down Sendromu Derneği

    UgandaThe Uganda Down’s Syndrome Association

    UkraineUkrainian Charitable Organisation “DownSyndrome”

    United Arab EmiratesUAE Down Syndrome Association

    United Kingdom (England, Wales and Northern Ireland)Down’s Syndrome Association

    United Kingdom (Scotland) Down’s Syndrome Scotland

    VenezuelaAsociacion Venezolana para el Sindrome deDown

    ZambiaDown’s Syndrome Foundation of Zambia

    Zimbabwe Zimbabwe Down Syndrome Association

    14DSi Representative Member OrganisationsDSi has 45 Representative Member Organisations from countries, special administrative regions and overseas territories

    mailto:[email protected]:[email protected]://www.avesid.org/http://www.avesid.org/http://www.dsscotland.org.uk/http://www.downs-syndrome.org.uk/http://www.uaedsa.ae/http://www.downsyndrome.org.ua/http://www.downsyndrome.org.ua/http://www.udsa.webs.com/http://www.downturkiye.com/mailto:[email protected]:[email protected]://www.insieme21.ch/http://www.downsyndrome.org.za/http://www.downsyndrome-singapore.org/http://www.downsideup.org/http://www.sindrom-down.ro/http://www.sindrom-down.ro/http://www.spsd.org.pe/http://www.pdsa-pakistan.com/http://www.downsyndrom.no/http://www.downsyndrome-ng.org/http://www.nzdsa.org.nz/http://www.dsanepal.org.np/mailto:[email protected]:[email protected]:[email protected]://www.lebanesedownsyndrome.org/http://www.yasmeen-jo.com/http://www.yasmeen-jo.com/http://www.downsyndromejamaica.org/http://www.downsyndrome.ie/mailto:[email protected]:[email protected]://www.downsyndrome.in/http://www.hk-dsa.org.hk/http://www.gibdownsup.org/http://www.downsyndrome.ge/http://www.downsyndrome.ge/http://www.trisomie21-france.org/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.cdss.ca/mailto:[email protected]:[email protected]://www.downsyndrome.be/downsyndrome.be/Bienvenue-Welkom.htmlmailto:[email protected]:[email protected]://www.downsyndrome.org.au/http://www.downsyndromealbania.com/http://www.ds-int.org/

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    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    DSi Affiliate Member OrganisationsDSi has 83 Affiliate Member Organisations from 51 countries, special administrative regions,overseas territories and 1 world regionAustraliaDown Syndrome NSWDown Syndrome W.A.e.motion21

    BangladeshBangladesh Down Syndrome Association

    BelgiumDownsyndroom VlaanderenApem-T21

    BhutanAbility Bhutan Society

    BoliviaAsociacion Sindrome de Down Aywina

    BrazilFederação Brasileira das Associações de Síndrome de DownMovimento Down

    CameroonNational Association for Down SyndromeCameroon

    CanadaDown Syndrome Research FoundationIdeal Way Inc.

    Chile Fundación Down 21 Chile

    ColombiaFundación Sindrome de Down del Caribe

    EthiopiaEthiopian National Association on Intellectual DisabilitiesAkaby Intellectual Disable Association

    EuropeEuropean Down Syndrome Association

    GambiaBrave Hearts Children Charity

    GeorgiaUnity “We Are The One”

    GermanyLaufclub Down-Syndrom Marathonstaffel e.V.

    GhanaInclusion GhanaThe Disablement Foundation of GhanaTogether Ghana

    GuatemalaAsociacion Guatemalteca para el Sindromede DownFundación Margarita Tejada Para SindromeDown

    HondurasCentro de Educación Activa

    HungaryDown Egyesület

    IndiaDown’s Syndrome Association of KarnatakaDown’s Syndrome Care AssociationJeevan Jyoti Sansthan (Special School) Parents of Down SyndromeParivaar Sahyadri The Apex Council of Parents of Persons with Intellectual and Developmental Disabilities

    IndonesiaIkatan Sindroma Down Indonesia

    JapanDSIJJapan Down Syndrome Society

    KosovoDown Syndrome Kosova

    LebanonNational Rehabilitation and DevelopmentCentre

    LiberiaMy Heart’s Appeal Inc.

    MacedoniaDown Syndrome Centre Macedonia Trisomija 21 - Skopje

    MalaysiaKiwanis Down Syndrome Foundation

    MaltaDown Syndrome Association MaltaInspire

    MexicoComunidad Down, A.C.Fundación John Langdon DownProyecto Trisomia 21 A.C.Un Nuevo Sol, Instituto para Niños Down, A.C.

    NepalDown Syndrome Society Nepal

    NetherlandsStichting Down Syndroom

    NicaraguaFundación 21 Sindrome de Down Nicaragua

    NigeriaDown Syndrome Support Initiative Nigeria

    PanamaAsociacion de Padres de Personas con Sindrome de Down

    ParaguayAsociacion de Padres de Personas con Sindrome de Down de Itapua

    PeruFamily.Down

    PhilippinesDown Syndrome Association of the Philippines, Inc.

    PolandJeden ŚwiatZespoldowna.info

    RomaniaAsociatia DOWN BucurestiDown Foundation “Raluca” Educational CenterEuropean Centre for the Rights of Childrenwith Disabilities

    Saudi ArabiaWerathah

    SloveniaDown Syndrome Centre, Planet 47

    SpainAsociacion Sindrome de Down de Baleares Down EspañaFundación Síndrome de Down de Madrid

    Sri LankaKosala Dullewa FoundationSoulink Lanka

    SudanSudan Center for Down Syndrome

    SwedenSvenska Downföreningen

    SwitzerlandLight for Sight

    TanzaniaPenny Aika Down Syndrome FoundationZanzibar Association of Down Syndrome

    TogoAssociation des Parents et Amis des Personnes Encéphalopathes

    Trinidad and TobagoDown Syndrome Family Network

    UgandaDown’s Syndrome Association of Uganda

    United KingdomCheshire Down’s Syndrome Support GroupDown Syndrome International Swimming OrganisationDown Syndrome Medical Interest Group UKand IrelandDown’s Heart GroupRobert Owen CommunitiesDown Syndrome Research Foundation UK

    United States San Diego Down Syndrome OrganisationNational Down Syndrome Congress

    http://www.ndsccenter.org/http://www.sandiegodownsyndrome.org/http://www.dsrf-uk.org/http://www.roc-uk.org/http://www.dhg.org.uk/http://www.dsmig.org.uk/http://www.dsmig.org.uk/http://www.dsiso.org/http://www.dsiso.org/http://www.cheshiredownssyndrome.com/http://www.idealist.org/view/nonprofit/wPKMz2bPgFsPhttp://www.dsfamilynetwork.org/ http://www.apape.wahost.org/http://www.apape.wahost.org/mailto:[email protected]://www.pennyaikafoundation.org/http://www.lightforsight.org/http://www.svenskadownforeningen.se/mailto:[email protected]:[email protected]:[email protected]://www.downmadrid.org/http://www.sindromedown.net/http://www.asnimo.com/http://www.planet47.si/http://www.werathah.comhttp://www.cedcd.ro/http://www.cedcd.ro/http://www.centruleducationalraluca.ro/http://www.asociatiadown.ro/http://www.zespoldowna.info/http://www.jedenswiat.org/news.phphttp://www.dsapi.org/http://www.dsapi.org/http://www.family-down.com/mailto:[email protected]:[email protected]://www.downpanama.org/http://www.downpanama.org/http://www.downsyndromenig.org/mailto:[email protected]://www.downsyndroom.nl/mailto:[email protected]://www.unnuevosolinstitutodown.yolasite.com/mailto:[email protected]://www.fjldown.org.mx/http://www.comunidaddown.org.mx/http://www.inspire.org.mt/http://www.dsa.org.mt/http://www.kdsf.org.my/mailto:[email protected]://www.downsyndrome.mk/http://www.myheartsappeal.org/mailto:[email protected]:[email protected]://www.downsyndromekosova.org/http://www.jdss.or.jp/http://www.dsij.jp/http://www.isdi-online.org/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.dscaindia.org/mailto:[email protected]://www.downegyesulet.hu/http://www.centrodeeducacionactiva.com/http://www.fundacionmargaritatejada.org/http://www.fundacionmargaritatejada.org/http://www.downguatemala.org/http://www.downguatemala.org/mailto:[email protected]://www.dfog.org/http://www.inclusion-ghana.org/http://www.kinleanita.de/mailto:[email protected]:[email protected]://www.edsa.eu/mailto:[email protected]:[email protected]:[email protected]://www.fundowncaribe.org/http://www.down21-chile.cl/http://www.ideal-way.ca/http://www.dsrf.org/mailto:[email protected]:[email protected]://www.movimentodown.org.br/http://www.federacaodown.org.br/http://www.federacaodown.org.br/http://aywinasindromededown.wordpress.com/http://www.absbhutan.org/http://www.apem-t21.eu/apem/http://www.downsyndroom.eu/mailto:[email protected]://www.emotion21.org.au/http://www.dsawa.asn.au/http://www.downsyndromensw.org.au/http://www.ds-int.org/

  • Join our Campaign to Improve Quality of Life forPeople with Down Syndrome Today!

    DSi’s success depends on being able to successfullyrepresent the global Down syndrome community.We also rely almost entirely on voluntary donationsand membership subscriptions to generate the income required to take forward our aims and objectives.

    With this in mind there are a number of ways youcan help us today:

    Join DSi Our members include people with Down syndrome, parents,family members and friends, carers, professionals, practitioners,researchers, organisations and people who are just interestedin Down syndrome.

    All new members who join our growing international communitycan access information, support and resources, become a part of“Reach Out”, our outreach training programmess in developingcountries, help us to represent people with Down syndromewith a louder voice through your endorsement, your input andyour feedback and help us to raise awareness by promotingWorld Down Syndrome Day on 21 March every year throughvarious global initiatives.

    If you have Down syndrome and you already represent otherpeople with Down syndrome in your country, you can become a representative member and join our Committee of Persons with Down Syndrome to speak for self-advocates within DSi andworldwide. Organisations who are the national representativeDown syndrome advocacy organisation in their country (or are willingto form a national coalition with other national representative organisations) can become representative members and workwith us to provide information, support and resources and implement “Reach Out”; join our committee forums to contributeto the direction of “Reach Out”, World Down Syndrome Dayand World Down Syndrome Congress and promote your activitiesthrough our various media outlets.

    Read more… DSi – Join DSi

    Fundraise for DSiWe need your help to raise much needed funds for our pro-grammes. There are a number of ways you can do this:

    Take part in or organise your own fundraising EVENT - pick•a challenge for yourself and seek sponsorship for it. Wecan provide advice and support;Ask if your COMPANY has a charitable fund which could•benefit DSi, get your colleagues involved or sign up to yourcompany’s PAYROLL GIVING scheme (UK only);Donate your GOODS or SERVICES. If you are a professional•you could do some pro bono work for us. Or if you havegoods to donate for an event or sell on EBAY FOR CHARITY(UK) then please let us know. Tell us if you know someone who is involved with a •charitable TRUST or FOUNDATION that we could apply to;

    Leave us a LEGACY (UK) and make a lasting and long term•difference to the lives of people with Down syndrome.

    Read more… DSi - Fundraising

    Donate to DSiYou can see What we spend your money on. You can make adonation now in a variety of ways including:

    Credit/Debit Card – Call us on 0044 (0)1392 357554 or email usat [email protected] and we can arrange a payment by CreditCard, Debit Card or Electronic Transfer.

    Virgin Money Giving – You can make a donation via our VirginMoney Giving page from anywhere in the world with Visa,Mastercard, American Express, Maestro, Electron or PayPal. Ifyou are a UK tax payer and eligible for Gift Aid, Virgin MoneyGiving will reclaim this on your behalf.

    Post – Please make cheques payable to "Down Syndrome International" and send to our International Office.

    JustTextGiving by Vodafone (UK only) – You can make a donation to DSi if you are in the UK. Text DSIN14 and theamount you choose to donate to 70070 e.g. DSIN14 £5.

    Gift Aid (UK only) – If you are a UK taxpayer, you can increase the value of your donation. The Gift Aid scheme meansyour gift can increase in value by 25% at no extra cost to you.This would mean that a gift of £5 a month would actually beworth £6.25 a month to DSi. If you would like us to claim backthe tax on any donation you make then please contact our International Office.

    THANK YOU

    16

    Down Syndrome International, Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, TW11 9PS, United Kingdom.Email: [email protected] Phone: 0044 (0)1392 357554 Website: www.ds-int.org

    http://www.ds-int.org/http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005285http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005285mailto:[email protected]://www.ds-int.org/what-we-spend-your-moneyhttp://www.ds-int.org/fundraisinghttp://www.ds-int.org/join-dsi