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The first Downside Up Europe Teens Cup took place in Moscow

A unique charity project, that knitted teenagers from European countries took place in Moscow and in culture and education tourism centre “Ethnomir”. It was called Downside Up Europe Teens Cup and was held for the first time. The idea of the event came to the Downside Up founder Jeremy Barnes and his 15- year-old daughter who see their mission both in supporting children with Down syndrome in Russia and in involving the young generation into charity.

The participants of the project, 14-16- year-old teenagers, collected money by their own efforts for the DSU educational programmes before coming to Russia. When gathered in Moscow they studied our culture and traditions together with DSU leavers. The teenagers went to see “Ethnomir”, investigated the capital centre, visited Kremlin, came down to the Bunker-42 in Taganka, walked around VDNKh.

In the end of their trip they spent a volunteer day at DSU and helped to prepare the educational and game materials for the new academic year. In the evening the guests with DSU graduates and employees walked along the Moscow river on a tourist boat.

Downside Up Charity run: a sports gala to support children with Down syndrome

The 7th annual Charity run within the framework of “Charity sport” project to support children with Down syndrome took place in Moscow. About 1000 runners stood on starting line. The event raised 1535900 roubles. All money will go to the Speech development programme “We start speaking” for children with Down syndrome all around Russia.

Novelties of this year Run are: the 50 metres distance for the smallest participants and a half maraphon (21 km). Those who did not find the strength to take part in the Run itself, could compete in the Fun Run, where wearing a bright unusual costume was more important than running fast. Organizers also prepared a lot of capturing funny amusements. Among them were a family quest, a concert, games and creative workshops for adults and kids, yoga training from an internationally recognized yoga teacher and others.

Nobody lost in the Run as all the participants could overcome themselves, the distance, stereotypes and myths about Down syndrome. But we would like to mention Denis Bulgakov, 20-years-old Michael and little Vasya`s father. He ran 20 km with a heavy jogging stroller and Vasya, who is enrolled into Downside Up programmes, himself.

Anastasia Myskina, the first Russian female tennis player to win a Grand Slam singles title supported the event with her personal participation. The famous sportswoman held a special flash mob through social networking sites inviting everybody to train and run. The authors of the funniest pictures from trainings got prizes from her hands at the award ceremony. Kirov and Samara held their events on the same day as Moscow. Totally in May seven Russian cities took part in “Charity sport” Run including Volgograd, Ekaterinburg, Irkutsk and Omsk.

«Lukomorie», a Downside Up theatre workshop unique project

World Down Syndrome Day is celebrated for the 10th time this year and it is a good occasion to demonstrate the high creative potential which is hidden in people with 47 chromosomes. The festival which took place in the Central House of Actors in Moscow with the support of Downside Up was timed to coincide with this date.

The main idea of the event was focused on the opening night of the play “Lukomorie”, prepared by the “sunny” pupils of the theatre workshop which is located at Downside Up in cooperation with such brilliant masters of stage as Sergey Yurskiy who recited the text especially for the performance, George Avsharov and Sergey Fursov.

The theatre workshop which is attended by children with Down syndrome has just been working for several months. They were those who acted the major parts in the show performed as a shadow play. “We set great goals, with no allowance for Down syndrome, and we wanted to light the feeling of wonderful inspiration in the hearts of our spectators, not the sympathy.”- Nikolay Ilnitskiy, the play director wrote on his Facebook page on the eve of the opening night. He says, that the plastic performance aimed to demonstrate the children`s nature, as their plasticity is much richer than decorations.

One can tell about the success of the play from the spectators` feedback. It was more than just capturing to watch the show. It was inspiring and joyful in a special way, as it always happens when one watches a creative liberation of soul which is promoted by real art.

Olivia Wilde Plays a Girl With Down Syndrome

Actress Olivia Wilde appears in the latest moving film by Saatchi & Saatchi for CoorDown, Italy's national organization for people with Down Syndrome.

Previous efforts by Saatchi' s Milan office for the charity have won awards including 18 Cannes Lions, and this time the agency's New York office worked on the spot, which is narrated by a 19-year-old college student with Down Syndrome, Anna Rose Rubright. In this film, Wilde plays AnnaRose as she sees herself -- an ordinary girl, out with her family, laughing, crying, running and dancing. It's only at the end we see the real Anna Rose, and she asks "How do you see me?"

The spot, directed by Reed Morano at Pulse Films, highlights World Down Syndrome Day on March 21. It aims to start a conversation around how those living with Down Syndrome see themselves and how they can be disadvantaged when people pre-judge them based on their condition.

Children with Down syndrome met hundreds of new friends

Hundreds of people who are not indifferent to children with Down syndrome gathered on February 14 to take part in the charity ski race and prove once again that doing good is as generous as exciting and sporting. The 13th charity race to support children with Down syndrome broke the record for the number of participants. Despite bad weather 629 sportsmen stood on the starting line.

People came with their families, friends and colleagues. All that was done to encourage the participants of the race and help the little ones involved into Downside Up programmes to take their first step, say their first word, and go the kindergarten or to school. This year 1 595 795 rubles were collected on the early intervention programmes for “sunny” children. That`s a fantastic sum of money!

The race programme offered distances for everybody, from 500 m for the smallest children to more difficult 3, 5 and 10 km for adults. This year those who are most resilient could try a 15 km distance. The participants could take part in a relay race or joyful competitions without skis for corporate teams, and visit our famous open air kitchen, try hot tea and special “sport” mulled wine. Afterwards medals for all players and prizes for winners were prepared, as well as the entertainment programme and the draw where people could get valuable presents.

This year four-footed pets from a sled dog club traditionally took part in the race. Alaskan malamutes, so cute, who attracted attention of all little ones, took part in the exhibition dog sled ride. Certainly, all could pet them and take a picture.

The professional judging panel was represented by the head coach of the Russian national crossbow shooting team Svetlana Salnikova, the first Russian champion in the 24hours ski race and European champion in winter triathlon Natalia Sila-Novitskaya, and master of sports, the Russian champion and World and European Championships medalist Olga Klimova.

Annually ski race “Charity sport” is held in several Russian cities at the same time. This time Kirov started one day earlier and passed the torch to Moscow. Totally 11 cities from different Russian regions took part in Charity Sport ski race under the auspices of Downside Up.

A charity concert in support of Russian children with Down syndrome was held in New York

A charity concert was held at The Consulate General of the Russian Federation in New York on 27th March. A part of the money raised will go to Downside Up to support children with Down syndrome in Russia.

Musicians from different countries including Japan, Estonia, Ukraine, Georgia and the USA took part in the concert. The programme included Peter Tchaikovsky`s works who is regarded as one of the symbols of Russian culture. American celebrated Soprano Monique McDonald prepared the aria from “The Queen of Spades” for the concert in Russian language. “It was hard for me, she says, I interpreted every word and tried to pronounce them correctly. This language is the language of music that unites us and gives us the chance to help others”.

The winners of the first Charity Award, established by «Downside Up» were announced

The official ceremony of the first Charity Award in support of children with Down syndrome, established by «Downside Up», took place in Moscow. This Charity Award is given once in three years on the eve of the World Down Syndrome Day (WDSD), which is observed on March 21. The idea to establish this award arose out of the global desire to thank people enrolled in support of children with Down syndrome and also with a view to synergize the efforts in this regard.

The Gala Evening at Ritz-Carlton was led by the famous Russian showman Valdis Pelsh and Amariya Rye, successful writer and our longstanding friend. Jeremy Barnes, Downside Up’s trustee, opened the ceremony and welcomed all participants. He noted: «18 years ago when «Downside Up» was formed no one could even imagine that it will reach such heights. Of course it would be impossible without massive efforts by hundreds people and organisations. Today we gathered here to thank all of you for all that you are doing for families, having children with Down syndrome», – Jeremy Barns addressed the audience.

«Our first experience was very successful», Yulia Kolesnichenko, press office chief of Downside Up said. «Of course, it was not easy to organize such big event. Moreover, it was our first experience. However, the ceremony was a great success and at the same time it was very heart-stirring. The words of appreciation and gratitude made the audience laugh and cry. Winners and guests came to the ceremony from different cities and countries. Throughout this event we heard: «For me it was the best evening for the whole year», «I have visited many ceremonies but this one has a specific atmosphere», and even «Now I know that for the coming years my goal is to make everything possible to step up to this stage once again and accept the Downside Up’s prize».

The prize-winners were governmental institutions, non-commercial organisations, Russian and foreign companies, mass media and members of the public, who have made outstanding contributions to support children with Down syndrome in Russia. The prizes were awarded in 12 categories. Sergey Koloskov, president of the Down's Syndrome Association was awarded for his outstanding contribution to raising public awareness of Down syndrome. On receiving this award he noted: «Children with Down syndrome and their families continued to be deprived of necessary support. They remain deprived of inclusive education, they deprived of support, which they need to integrate into society. We shouldn’t forget to draw the authorities’ attention to the need to create an effective system to support families, having children with Down syndrome».

Ministry of Family Affairs, Demographic and Social Policy for the Kaluga region and Novosibirsk State Pedagogical University were awarded for their contribution to the development of state system of support for children with Down syndrome.

«Institute of Correctional Pedagogy of the Russian Academy of Sciences» was awarded for cooperation in the development of the scientific and methodological basis of early intervention programmes for children with Down syndrome.

Resource center of inclusive pre-school institution «Kindergarten for everybody» was awarded for contribution to the development of inclusive education for school-age children with Down syndrome. Channel One Russia and International News & Information Agency «Russia Today» with special project «Life without barriers», and publishing house «Arguments and Facts» were awarded for coverage of Down syndrome in mass media.

The prize-winners of the first Charity Award in support of children with Down syndrome are:

Sverdlovsk Regional Public Organization Supporting Children with Down Syndrome and Their Families «Sun children» for contribution to the development of regional support services for children with Down syndrome.

«Boeing Russiа», «PepsiCo», «ExonMobile Russia Inc», «Veles Capital Investment Company» for corporate contributions to support services for children with Down syndrome.

«Societe Generale International Financial Group» and corporate sport activities, «QIWI Group» and charity event «Pereverni mir», «Deloitte CIS» and adventure race «Extra Mile» for society involvement and corporate contribution to support services for children with Down syndrome.

Evelina Bledans for outstanding contribution to raising public awareness of Down syndrome.

Department of the State Automobile Inspectorate for Borovsky District of the Kaluga region for the provision of security services in Charity Bike Ride «Sport Vo Blago» for many years.

Alexander Derevshikov for his commitment to «Sport Vo Blago» project for children with Down syndrome.

«JamilCo Group of Companies», «Shell Russia», «HSBC Bank Russia» for support of Charity Bike Ride «Sport Vo Blago» for children with Down syndrome over the years.

Downside Up specialists from Russia learn british experience

A group of Downside Up specialists from Russia (Moscow) together with their colleagues from Yekaterinburg have recently made study tour to the UK. Russian teachers have already made several visits to the UK, enjoyed fruitful meetings with British colleagues for sharing new ideas and experiences, for analyzing different educational programs and approaches. This time their main task was to learn more about speech and language development programs for early age, which British specialists use in their work. In the light of the changes in the educational system taking place in Russia today it is very important to analyze British experience: how different types of organisations (state, municipal, non-profit) support families and how they coexist and cooperate. And to look closely at the way the system of family support for children with special needs is implemented in the UK.

Tatiana Nechaeva, director of Family Support Center of Downside Up says: “We knew beforehand that we would see a more favourable picture of the situation than the existing one in Russia. Early Intervention System exists in the UK more than 30 years and there are no doubts that family-centered care model is the most appropriate model of early intervention for children with special needs. In England children with special needs are not isolated from society: there are a lot of different institutions of early intervention, classes with specialists at training centers and charitable organisations, special nurseries and schools, inclusive institutions and also special classes at mainstream schools are available. Moreover, a child, his or her parents and teachers get full support of specialists regarding a wide range of matters”.

Downside Up’s team has visited the classes on speech development at two non-governmental organisations. One of them is “21 and Co” which conducts its activities at the Langdon Down Centre in Normansfield, where Dr. John Langdon Down lived and worked. “21 and Co” is a charity offering help and support to children with Down syndrome and their families in South West London, Surrey. Its main activities are: speech and language development for children, social and communication skills, support for parents who have recently received a Down syndrome diagnosis for their child, support for brothers, sisters and other family members, awareness-raising activities in the local community.

Another organization - “Downright excellent” was founded by parents of children with Down syndrome about 8 years ago. This organization is also fundraising and conducts speech and language group therapy and communication and social interaction skills development for children of 0 to 9 years old. All programmes are conducted by experienced specialists. In England programmes, developed by Down Syndrome Educational Trust are extensively used. In particular, See and Learn programme, which is the basis for many speech and language therapists from the UK and is a standard for other approaches to follow, depending on a child’s needs. Unfortunately, there are no standardized programmes for children with Down syndrome in Russia.

“Downright excellent” organizes and delivers classes and meetings with families at Golden Lane Campus, which includes primary school, special educational needs school for children with motor problems and Early Intervention Center “Stay and Play”, where children can come with parents, play and also pass the time. Different children, including those with impairments of support-motor apparatus, are close to each other, move freely and play together. Specialists, volunteers and parents are helping them and for children with impairments of support-motor apparatus there is also a massive park of different technical supplies. And everybody feel comfortable! This space in full conformity with such descriptions as “a completely accessible environment”, “barrier free environment”.

“Bird in Bush Community Nursery” – is a municipal nursery and an excellent example of inclusion of young children with special needs with their typically developing peers. This wonderful nursery is a part of The London Early Years Foundation (LEYF), which began as the Westminster Health Society in 1903. The main task of this foundation is to support and to offer high quality education and healthcare services to families with children of early and pre-school age.

During this study-tour Russian specialists have visited the Early Years Center Wandsworth, which offer support to young children of 0 to 8 years who have significant or complex needs or disabilities (including Down syndrome) and their families living in Wandsworth. This Center not only delivers the classes for children but also offers information and practical support to families in finding family support services and trainings, helps to contact with other parents etc. The Early Years Center Wandsworth also offers support in processing documents for getting special support of a child at education institution.

Inclusion of young children with special needs in mainstream nurseries and schools in London is an accurately regulated process of accompanying, including choosing a tutor, visiting specialists of Early Intervention Centers and getting methodological recommendations from them, and also legal support of family if required. For example, voluntary group of parents Positive Parent Action (PPA) offers information and psychological support for families, raising children with special needs.

Not only Downside Up’s specialists from Moscow participated in this study tour, but also their colleagues from Yekaterinburg: representatives of two pilot enterprises of Downside Up in Sverdlovsk region (in Project “Dissemination of family-centered model, developed at Downside up”): Loginova Nadezhda, director of Center of psychology-pedagogical rehabilitation, Zarechniy and Drobakhina Inna, deputy director for educational work of “Rehabilitation center for children and teenagers with special needs”, Kamensk-Uralskiy. And longstanding partner of Downside Up - Tatiana Cherkasova, the chairperson of “Solnechnyie Deti” (“Sunny Children”) parents organization.

Cooking class with Tupperware Inc.

Today Tupperware Inc. held a cooking class for our children. Under the guidance of the chef, the children learned to cook three summer courses: funny sandwiches, a "dynno-strawberry" drink, and a fruit salad.
All products and utensils for the class were provided by Tupperware. The company also presented gifts to the children. The children in return gave souvenirs, made ​​by the kids at DSU. The class ended with a friendly tasting, during which everyone was treated - children, parents and teachers.

We would like to shout out a huge thank you to Tupperware Inc.! What a great idea, and a wonderful example of active charity!

LET ALL THE CHILDREN GO HOME!

“A visit to Downside Up, where we saw parents bring their little children to a junior group learning session was enough for us to decide to take our child home. We rushed immediately to collect all the necessary documents to take our daughter home. She was six weeks old then…And all these years Downside Up Early Intervention centre has been the only place where we received help". Ludmila Kirillov, the mother of a 6-years old girl Nika.

There is hope specialists in maternity homes will no longer advise parents to abandon children with Down syndrome – we wrote about it in our previous issue. But is this really enough for families to have confidence in the future? It is the lack of objective information and early intervention which makes parents so unsure of their capabilities to raise a special needs child. More than once we were witness to parents’ changing their mind and refusing to abandon after they were given support and told their children had future.
The Kirillovs are only one of the 3700 families registered on Downside Up programs.

Please make a donation and help us support the families of children with Down syndrome.

£12 is the cost of special literature package for families of new-born children with special needs;
£27 is the cost of a session with a psychologist for parents;
£32 is the cost of a home visit of an early intervention specialist to a family of a 16-months old child.

Let every child go home with their families. Thank you for your generosity!

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