National representatives with Down syndrome Meet our National representatives who advise us and provide feedback and oversight on the advice we receive from expert advisors and other stakeholders. Our National Representative Committee planned, scripted and recorded this video. They explain in their own words what a National Representative committee is, what they do and why their role is so important to Down Syndrome International. Meet the team Roxhensa Xhengo - Albania Michael Sullivan - Australia "I’m retired but being a self-advocate is job in itself. In my spare time I like going for walks, going to the gym and keeping active. I also like to read, do puzzles and just relax. In my life I am proud of lots of the things I have done. This includes; Being a member of the newly formed Down Syndrome Advisory Network, for Down Syndrome Australia. Being a self-advocate, putting others before myself. Working on many different projects, doing a lot of public speaking, sitting on boards such as the NSW Council for Intellectual Disability board for many years as chairperson and vice chairperson." Fahim Hassan - Bangladesh "I am Fahim Hassan self advocate for Down Syndrome Society of Bangladesh. Presently enjoying indoor exercise like as yoga, cycling, jogging at the time of corona virus pandemic. While I can not go outside to do what ever I like. Hopefully we will see you in Bangladesh in the future." We would like to thank Shahadat Akbar Otonu, who retired from this role in July 2020, for his valuable contributions. Janet Charchuk - Canada "I volunteer at a day care called Kids West and work with the after school program. I am a motivational speaker. I am in the Special Olympics and volunteer with that. I am on the provincial team for Bocce and am training for Nationals this summer. I live independently so do some chores, cooking, volunteering and training. I enjoy working out at the gym, going to yoga classes, hanging out with family and friends, cooking and sports. In my life I am proud of being able to live on my own. I am being proud of being at my first World Games in Austria in 2017 where I won gold for Canada in snow shoeing. In the future I hope to move to a larger place closer to my boyfriend. I want to continue on playing sports, working as a self-advocate and motivational speaker, and enjoying life." Juan Elias Alvarado Monge - Costa Rica Salvador Gilberto - El Salvador Antoine Fontenit - France Serina Abdulah - Ghana “My name is Serina Abdulah, I attend Presby Girls Junior high school. I like to dance and make new friends all the time but in my country where people living with Down Syndrome are seen as evil spirits and aliens. Sometimes my colleagues refer to me as a monkey while others do not want to associate with me at all. I don't think people with Down syndrome deserve these treatments in society. I joined ROBB FOUNDATION as an ambassador advocating for the rights of persons with Down syndrome in Ghana and have since been on regional and national sensitisation campaigns around the country including families creating awareness of the condition. I want to be a beautician one day. My life matters and I believe all persons with Down syndrome lives matter too.” Devanshi Joshi - India Devanshi is actively involved in motivating parents and her friends with Down syndrome through self advocacy. She has participated in many self advocacy workshops of Self Advocates Forum of India (SAFI) organized by PARIVAAR and National Trust. She has volunteered at Shilpotsav, an art festival of National Trust and also at Swawalamban, an awareness exhibition organised by the Ministry of Social Justice and Empowerment, Government of India. Devanshi is a keen photographer and some of her photos have been sold at an exhibition in Delhi. She also enjoys travelling and is probably the first woman with Down syndrome to have trekked and crossed 18400 ft., without any difficulty. Morgan Maze - Indonesia "My name is Morgan. I was born in Jakarta to an Indonesian mother and a French father. I attended the French school in Jakarta until the age of 14. I then studied from home with the help of my parents. I can speak Indonesian and French. I also understand some English but am not as good as with the other two languages. I am currently assisting my mother who runs a class for a group of 20 youngsters with Down syndrome. I help her in the preparation of each class, and coordinate with my peers during the sessions. I am an activist in the disability movement in Indonesia, have participated in seminars in Indonesia and overseas, and given a speech at the Geneva United Nations Office for the World Down Syndrome day in 2019. I presented a project initiative for the creation of a restaurant run by people with Down syndrome to Now-Us!Award of the Netherlands in 2019, along with nine other organizations from Asia and Africa, and I was the only person with intellectual disability presenting a project at that event. I also helped my mother write “Easy Read Guidelines on Covid 19” for intellectually disabled people. My story with my mom on “Self-advocacy” will be featured in Narrative Power Collective Action Volume 2. They chose us together with other 20 collaborators from around the world to create this new narrative space. My hobbies are cooking, reading, hip-hop, swimming, gardening and playing piano." Eileen Dunne - Ireland Eileen is chairperson of the National Advisory Council of Down Syndrome Ireland. "My achievements are about communication and independence. People with Down syndrome should speak up for themselves. I like my photograph because it shows me talking about all. I am at the moment doing training sessions in bowling. I am happy and proud of representing Ulster in the Special Olympics Ireland in bowling. My dream is I would like be an ambassador for Down syndrome and would like to be doing films and photography." Carlos Ramirez - Mexico Dulguun Byambadorj - Mongolia Ashish Joshi - Nepal "I am working in Zest Lab, Kausaltar in reception as an assistant. I am learning office work. I get pocket money every month. I go to office myself by bus. I like to talk to friends, eat food, see TV and go out and enjoy and help poor. I am proud to do my job. I want to be an officer and do business." Andrew Oswin - New Zealand "Hi, my name is Andrew and I am a self-advocate. I am a member of the New Zealand Down Syndrome Association’s STRIVE Leadership Group and the Canterbury Down Syndrome Association. I enjoy being a self-advocate because I know how it is important and what it means to me representing New Zealand (my country). Hobbies I enjoy are being involved with my Special Olympics Athletics training, reading, piano playing, singing, ten pin bowling, cooking, baking and going to church." Favour Onyisi Jideonwor - Nigeria "I like dancing, writing, braiding hair, and modeling. I was born with Down syndrome and there are other people with Down syndrome in my country but a lot of people do not know what Down syndrome is. Our society sees us as idiots, imbeciles, morons, retards and disabled; with such mind set, we are in a very weak position. We have a lot of challenges and we cannot fit into our society; however, I don’t think people with Down syndrome are weak and disabled. With the help of Down Syndrome Foundation Nigeria, people are becoming aware of Down syndrome in my country, especially during our Awareness Week. My dream is to support people with Down syndrome and make the society understand that, there is ability in disability. Now I feel like a super-star because i am a self-advocate and a representative member of Down Syndrome International online committee forum." Jaime Cruz Juscamaita - Peru "l have a job as restaurant assistant and as a host in Theather La Plaza. In my day to I like to go to the movies to see Peruvian movies and to go to the theatre, to do sports, etc. I feel proud to finish my studies, win medals in swimming, participate in plays, my works. My dreams are to be an actor, to be an athlete, to be independent, to have a family and to marry." Stuart Campbell - Scotland "I am a chatty, witty 34 year old young man who has Down syndrome. I live in East Ayrshire, Scotland. Previously I have done a poster presentation at WDSC 2009 for the Scottish Youth Parliament. I would like to do more poster presentations, PowerPoint presentations, and promoting events but this time for DSi at events near me or abroad." Sheri Brynard - South Africa "I have been an assistant pre-primary teacher in Lettie Fouché School for the last 12 years. After my working day I go to the Gym and I also go for English and Drama classes. I have very little free time, but if I do, I watch TV, read or play on my I-Pad. I have a very busy life because I do motivational speeches nearly every weekend and sometimes in the week as well. I have done more than 600 National and International motivational speeches. I am also very fortunate to have addressed a conference at the UN in New York and then last year I addressed the Self-Advocacy Conference in Geneva, Switzerland at the United Nations Office. I have been awarded many awards, but the most special of them are the National Presidential award (the highest award) for people who have made a contribution to the lives of mentally handicapped people in South Africa. The World Down Syndrome Day Award in recognition of my efforts to change the lives and perceptions of people with Down syndrome, is also very special and I was chosen as the first Shoprite Checkers Woman of the Year with a disability, in my category “Young Movers”, in South Africa. My dream to write my own book came true last year when my book was published in Afrikaans and English. I have one dream which has not come true and that is to meet Chris Burke who was an actor in a show, called “Life Goes On”. He has always been my role model." Samwel Mwanyika - Tanzania Robert Cem Osborn - Turkey "I am 26 years old. I am living in Istanbul, Turkey. I am working in Hilton Bobonti Hotel, Şişli, lstanbul. Now l am in holiday because of the virus. After, l will turn back to my job. I am a person with Down syndrome. I am a member of Self-Advocacy group in Turkey and l represent Turkey in DSi Representative Committee. As a self advocate l speak in seminars, webinars and in national and international meetings. l speak about rights of people with Down syndrome. I am making activities with Down Syndrome Association - Turkey. l make social activities with my friends. We respect each other and spend time happily together." George Okudi - Uganda "My normal day Monday to Friday is working and weekends; Saturday half day; Sunday is prayers. My hobbies and interests are watching TV, visiting people, playing football, reading newspapers, making friends, driving and doing cleaning of my room. I have a job. I have stated a transport business. In the future I want to improve on my transport business and become a big company dealing in transport business. And become a director, owning a fleet of vehicles. Also to keep increasing my knowledge of various levels, to suit in the evolving world with its development and technology." Chaica Al Qassimi - United Arab Emirates "I am Chaica Al Qassimi. I am 24 years old, from the UAE. I am a self-advocate of Down Syndrome International and Inclusion International, as well as a Youth Leader for the Special Olympics UAE. I am also the MENA representative for Inclusion International. A few of my proudest achievements were carrying the Special Olympics Torch from Greece to the UAE, and speaking at the Opening Ceremony of Abu Dhabi’s Special Olympics in 2019. In my free time I like to do martial arts, as I am a black belt in karate and a blue belt in BJJ. I do 9 martial arts; karate, boxing, judo, capoeira, kickboxing, Muay Thai, Taekwondo, and Brazilian Jiu Jitsu. I’ve competed in Egypt and Madrid, and earned a silver medal in BJJ. I believe that inclusion is important in all aspects of life, and I hope that we can all come together to create a more inclusive world." Kate Powell - United Kingdom "I have worked one day a week for the Down's Syndrome Association for 20 years I was a founder member of the Down 2 Earth group, I am the editor of their magazine. I have attended conferences at the UN in New York & Geneva speaking about WORKFIT which is to support people in employment. My hobbies are dance, drama,and swimming. As a swimmer, I represented Greater London in many Special Olympic events. I belong to the Larondina Dance Company and have performed in many European countries promoting the benefit of dance to health and fitness of the Down syndrome community." Kayla McKeon - United States "My name is Kayla McKeon I am the Manager of Grassroots Advocacy for the National Down Syndrome Society (NDSS) where I work to advance legislation beneficial to the Down syndrome community. I gained experience working with Members of Congress as an intern for Congressman John Katko of New York. I was named NDSS Self-Advocate of the Year in 2016 and joined the NDSS staff the following year. As the first registered lobbyist with Down syndrome, I am spokesperson for NDSS and the Down syndrome community, participating in media and speaking publicly both nationally and internationally. I am pursuing an associate degree at Onondaga Community College. I reside in Syracuse, NY with my parents and dog Bella. I am a Special Olympics athlete and former Special Olympics Athlete Congress member. In 2011, I competed in the Special Olympic World games in Athens, Greece winning silver and bronze medals. I am active in my church, am an avid reader and love swimming in my pool when the weather is warm." Andile Alexis Dube - Zimbabwe "With my day I like bathing, washing dishes and cleaning. My hobby is swimming. In my life I am proud of attending workshops and going to my cousin's wedding. In the future I would like to work at a creche."