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Downside Up took part in the charity auction named Action!

A pre New Year`s Day charity auction takes place annually on the first December Saturday in Moscow. It is organised by Svetlana Bondarchuk and Eugeniya Popova`s PR International agency. The festive evening is a traditional gathering place for Moscow beau monde. Famous directors, scriptwriters, theatre and cinema actors, entertainment industry people and businessmen attend the event.

This year the project was supported by honoured Russian directors including Renata Litvinova, Anna Melikyan, Vladimir Khotinenko, Janik Faiziev, Andrey Zvyagintsev, Alexey Utchitel and many others among them. Each of them made a narrative short film on any subject for the occasion. The movies were shown on a big screen. Afterwards an auction where any person could buy the picture he or she enjoyed started. The owners of the items gained the films and became the copyright holders.

Anna Melikyan`s drama “8” earned 9 million roubles which is a record. It made her the winner. “All actors asked nothing for their work”, she said. Totally the auction got more than 50 million roubles which will go to such charities as Downside Up, Let you live!, Gift of life, Anton`s right here, Women`s health, Exit, Artist, Life as a miracle, Creation.

Downside Up was represented by the fundraising director Irina Menshenina and the project manager Julia Goncharova. “It`s the first time Downside Up has got the honour to take part in such event”, Julia said after wards. – “It`s priceless for us as the auction will help provide the support for the children under our care. I`d like to thank Alexander Kott and Anna Tsukanova-Kott for their narrative short film “Transformation” which was put out for bids to raise money for Downside Up and got 1 million roulbles. We hope that our participation in this event will become regular. And we wish it from the bottom of our hearts.”

Downside Up continues its programme for non-commercial organizations with support of the Ministry of economic development of the Russian Federation

Downside Up Charitable Fund continues to carry out its charity programme for regional NCOs that support families raising children with Down syndrome. Downside Up has carried out the project “Improving organizational and financial sustainability of regional socially-oriented non-commercial organizations supporting children with Down syndrome and their families. Programme extension” with support of the Ministry of economic development of the Russian Federation since 2012.

According to this programme more than 40 NCOs have been trained for three years. Staff members of these organizations and representatives of parent associations have participated in webinars, trainings, conferences and study tours to Downside Up.

As a result “Charity Sports” project have been launched in ten cities while it's events have become annual. Partner relationships have been established with governmental bodies and institutions, as well as businesses, and now a lot of them support families of children with Down syndrome on a regular basis. Involving media in the events carried out in the framework of the programme helped draw attention of the society to the issues related to people with Down syndrome. So, more young children with Down syndrome and their families managed to receive support! The new two-year long cycle of the training programme includes online and face-to-face on-site training with the usage of the gained knowledge and experience.

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.

The Boeing grant

We are pleased to announce The Boeing Company, GCC grant award aimed to provide educational support to the families in Russia raising children with Down syndrome of 3-6 years old having behavior and psychological difficulties, and families in difficult social situation. This is the fourth Boeing grant we operate to address the needs of a child and his or her family in the areas such as relationships between child and parents, child and teachers, and others. Children will attend educational group sessions separately from their parents and learn to act unaided by them. While children are at the session, parents attend a parent support group run by a psychologist. The project will last till June 2015.

(Photo: Boeing Team with Andrey Vostrikov, Special Olympic Games champion at CHARITY SPORTS Bike Ride)

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!

EXTRA MILE: Iron wills and open minds

Mud, rain, waist deep water, steel, aluminum, bikes ... This is not an everyday course, even for seasoned extreme sports fanatics. On the weekend of September 7th, was the first race of the "Deloitte» Extra Mile - 2013". Many of the participants were not even extreme sports athletes, but everyday office workers! The weekend resulted in joyful fatigue, positive emotions, and 850,000 rubles collected for DSU programs.

This year's competition was attended by 40 teams. Adventurers conquered the track, which was considered far from easy by most. The course consisted of an orienteering terrain and obstacle course, as well as a cyclecross, then to top everything off, was the rafting competition.

Many thanks to the "Deloitte" company for hosting the event! Also thank you for the support and active participation of the other companies involved: "PepsiCo" and "Renaissance Insurance". We are looking forward to the next Extra Mile race!

"Thank you for the opportunity to participate in sports charity projects! As always, everything was fun, and all together very interesting! We competed for prizes by performing the following tasks: orienteering (you had to run through the woods and use an electronic key at check points); cycling (the same, only led + bonus mission - to climb on a rope across a river with a bike in your hands!); the encounter (solve logical questions looking for hidden codes throughout the park, guided by photos and text prompts). Finally the most interesting and "wet" job - rafting! Collect a raft made of seven boards and three fairly short cords, take the oars and paddle through a pond, floating about 400 meters. A big thanks to my team "ATVs"! We won third place among 40 teams! (Vladimir Ponomarev, the "PepsiCo" company).

The 18th Annual Charity Sports Bike Ride

The 18th Annual Charity Sports Bike Ride to aid children with Down syndrome finished on the 25th of August in Vasilievsky Spousk, Red Square.

The Charity Run was organized by Downside Up Charitable Fund.

The principle aim of the Bike Ride is to raise funds for early intervention programs for children with Down syndrome and to call public attention to individuals with Down syndrome.

More than 250 bikers, both private individuals and corporate participants, crossed the finish line. The total amount of donations made by corporate and individual participants was 6 million 920 thousand rubles.

After two days of racing across the Kaluga region, where they stayed for the night, the bike ride participants cycled along the Moscow River embankments from Luzhniki to Red Square. On that final leap along the Moscow river embankments, a large group of cycling fans who support our cause joined the race, and our ranks more than doubled. A group of famous sportsmen were at the head of the peloton: the world champion sprinter in 2013 Denis Dmitriyev, a 6-fold European champion and the 2011 Russian champion Anastasia Voinova, a European champion in triathlon Natalia Sila-Novitskaya, and the senior trainer of the Russian national triathlon team Andrey Goudalov.

We had participants from many countries, age groups and professions. This year it was the 7th bike ride of Henry Thompson, a Russian teacher, who came all the way from London in order to take participate in the bike ride. Three young men with Down Syndrome - Andrey Vostrikov, Stepan Bezroukov and Timur Ibalduyev cycled a 180 km route, demonstrating their unlimited potential. Andrey is an all-round World champion in gymnastics among special needs individuals and a gold medal winner at 2011 Special Olympics Summer Games in Athens. Sport is a hobby for Stepan Bezroukov. This was the first serious race for the young Timur Ibadoulayev, whose perseverance impressed the other cyclers.

Traditionally, parents of children with Down syndrome also take part in the race. As the bikers rode into Red Square, they were greeted by the heroes of the day - children with Down syndrome. The children cycled their traditional 50-metres race across the cobblestone Red Square to cheer the intrepid bikers.

The children’s race was followed by an awards ceremony and a gala concert.

Winners of team competitions:
Amateur League
3rd place – Boeing Beta team
2nd place – PepsiCo Adrenalin Riders team
1st place – Boeing-Gamma team

Corporate League
3rd place – Boeing-Alpha team
2nd place – PwC team
1st place – JamilCo team

Special nominations:
“The fastest participant” – Denis Putintsev (HSBC team)
“The fastest female participant” – Ekaterina Bogatyr (PepsiCo-Agusha team)
“For team spirit and openness” – JamilCo
“For ferve and singulatity” – Shell
“For courage” - Yekaterina Dmitrienko (PWC)
“Best fundraiser team” - PepsiCo
“Best fancy dress” – Ludmila Kirillova, mother of a Downside Up graduate
The prizes were provided by JamilCo, Craft, Electra, RunBike, Finam Radio, Bigwall, Kinaree Thai Spa, VelMedCosmetics c-ny, Yves Rocher, Bouchee confectionery, and Lencom Theatre.

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