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DOWNSIDE UP HAS PRESENTED ITS DIGITAL STRATEGY ON IT MANAGEMENT FORUM

IT Management Forum is taking place in Moscow for fifteen years and gathers leading professionals in IT management. This year for the first time the program of the forum includes a social project. Downside Up presented the spectrum of digital services aimed at people with Down Syndrome and available for families and for professionals.

Olga Pavlenko, counselor on development of digital services of DSU, spoke on ITMF 2019 on developing and implementing the digital strategy of DSU.

The fund DSU has been supporting supporting people with Down Syndrome for more than twenty years. DSU not only provides pedagogic and psychological support for the families, but also educates professionals, elaborates individual teaching technics for special needs kids development. More of twenty years of experience permitted to create serious methodologic base. Professionals of unique experience work at DSU helping children with Down Syndrome achieve progress and socialize. In order to reach families who cannot come to Moscow, the fund is developing its digital services. Moreover, DSU is going to reach beneficiaries in other Russian-speaking countries.

- We have a very good understanding of who our beneficiaries are and how we can help them, - Olga Pavlenko tells. – We have been able to create services in accordance with their requests. We’ve created a catalogue which includes 26 services (and we hope that it will become bigger). Some people need educative online videos, others need mobile apps, interactive maps that allow to locate other similar families or professionals. We create simple services but we are making them easy to use. For online education one just has to create an account with a list of open services, including online subscription to classes and automatic reminders.
Olga Pavlenko’s speech was appreciated by colleagues and other members of the forum.

- I am very glad that we started to communicate and that we spoke about such important topic on the forum where people usually talk a lot about business and technologies, and much less about people and community. – shared her impression Natalya Dubova, programming director of IT Management Forum.

36-YEARS OLD TEACHER WITH DOWN SYNDROME TAKES PART IN TV SHOW “MALE / FEMALE” ON THE 1ST TV CHANNEL

A new episode of TV show “Male / Female” on the 1st TV Channel was dedicated to stories of those people who took the most important decision of their lives – to help others.
One of the heroes of the show is Andrey Zakharov, 36 years old, from Perm. Andrey has Down Syndrome. He tutors at school and helps children with the same condition to learn. Together they learn poems by heart, read books and play tubs. Apart from tutoring, Andrey is fond of playing chess, darts, swimming and running.
Yulia Lentieva – Head of Department of Schoolchildren and Young Adults Support of “Downside Up” – also took part in the show and acted as the expert:
- I have to admit that Andrey is doing really great. He is doing a big deal, - told Yulia Lentieva. – Moreover, he is a real sportsman, a hero. He is tutoring children with Down Syndrome who have difficulties in, for example, learning poems by heart or starting a conversation. Helping others is really very important. Andrey is charismatic, he knows a lot and he can share a lot with kids. They like to spend time together; they don’t have any barriers in communication. Andrey is an open-hearted person; he treats everything he does sincerely. I do wish to all children with Down Syndrome to achieve more and to learn more and more. I know that kids with Down Syndrome can make excellent progress, they can learn, they go to schools and kindergartens if they are brought up in a family full of love.
(Addresing to Andrey’s mother) I strongly wish that Andrey becomes more than just a volunteer-tutor and that he has a successful working life.

The air of TV show “Male / Female” dated 31 May 2019 is accessible via link: https://vk.com/video-70494454_456239365

In one the largest regions of Russia no babies born with Down sindrome were abandonned by their psrents

All of 36 babies with Down Syndrome born in Sverdlovsk Region this year stayed in their families. Press conference in TASS Inform Agency dedicated to the World Down Syndrome Day highlighted this amazing fact and also the problem of communication among doctors, psychologists and parent of children with Down Syndrome.

Telling parents about a possibility that their newborn baby has Down Syndrome is psychologically difficult not only for parents, but also for doctors. That is why experts of the Charitable Fund “Downside Up” together with their colleagues from Sverdlovsk Regional Non-Governmental Organization “Sunny children” and specialists of Clinical and diagnostic center "Protection of mother and child health" of Ekaterinburg have elaborated Protocol of regardful disclosing of possible condition of a newborn. It is aimed at doctors of maternity clinics and depicts a right way to communicate with a mother of a special needs baby right after his birth and during her stay at the clinics. The Protocol was implemented by the Order of Healthcare Ministry of Sverdlovsk Region in October 2016. Two years later the first results of its implementation were registered.

Alexander Borovykh, Head of Strategies Department of the Charity Fund “Downside Up”, underlined that half of the parents who abandoned their babies at the hospital made this decision due to tactless and unethical primary communication about possible diagnosis from the doctors. However, upon the results of the previous year, all 36 babies born with Down Syndrome in Sverdlovsk Region stayed in their families. Not a signal case of baby abandonment due to this diagnosis is recorded. Authors of the Protocol hope that it will be implemented in other regions of Russia. “At the beginning of this week we sent official letter with all supporting documents enclosed to the Moscow Department of Healthcare” – told Alexander Borovykh.
Tatyana Nechaeva, Head of Family Support Center of the Charitable Fund “Downside Up”, assistant professor of neonatology department of Pirogov Russian National Research Medical University, pediatrician of Philatov Children City Clinics №13 Galina Asmolova, academic director of Research Centre for Medical Genetics of Russian Academy of Medical Sciences, academician of Russian Academy of Medical Sciences, professor, member of Board of Trustees of “Downside Up” Evgeny Ginter, psychologist Annetta Orlova and mother of a girl with Down Syndrome Irina Gromova took part in the press conference in TASS on the 21st of March, 2019.

Downside Up exists for 21 years

The anniversary year has passed almost unnoticed. Downside Up became a year older, more experienced, more professional. The Foundation is growing and developing, which is perhaps the most important thing for any organization. The Director of Downside Up, Anna Portugalova declared the results and congratulated everyone with the anniversary.

Downside Up is celebrating its 21 year of existing. This is a wonderful age! We are full of ideas, plans, hopes and strength for the implementation of our aspirations! This year we paid great attention to the development of a system of continuous support for people with down syndrome from birth to 18 years and older. We interviewed families, experts and made changes to the programs so that at every stage of life the family could get the support that it needs. Also, together with our partners, we have made a lot of efforts to promote the idea of creating a system at the state level for long-term family support in raising a child with down syndrome. We are very pleased that we have more and more partners in different regions, both in NGO’s and government agencies.

We still have a lot of work ahead, and I believe we can do it. Of course, not alone, but together with you, our friends. Because only together we will be able to help families with children with special needs, to quickly find support, in every corner of our country. I want to say a big thank you to our entire team, all the people and organizations that help us and have become part of our great team of like-minded people! Many thanks to all the guys with down syndrome and their loved ones, without which there would be no positive changes!

Teenagers with down syndrome learn to care for animals

For the second year in a row, teenagers with down syndrome came to the centre for pet nutrition studies to help their employees in their daily work and, of course, to communicate with its furry inhabitants. The centre contains about a hundred dogs of different breeds; small chihuahuas, a huge Central Asian shepherd dog, poodles, pomeranians and many others. The dogs welcomed the guests with joyful barking!

Children were positioned in pairs and went to the work sites under the leadership of skilled experts. Their duties included the care of the dogs, cleaning of the territory, walking and even basic animal training. Volunteers washed dogs, combed the fur, poured water in jugs, washed the cages and cleaned the area. Then the handlers allowed the children to take the dogs on a leash and ordering them to perform various commands.

It is impossible to describe how happy then children looked at this moment! It is difficult to come up with a more effective reward for their voluntary work contribution at the centre. But the guests were in store another surprise: the celebration in honour of the birthday of the dog-symbol of the Centre - a huge good-natured Central Asian shepherd named Yasha, who turned 11 years old. In memory of Yasha photos with the guests were taken and our children drew pictures on the pavement with chalk. To end the day, everybody sat at the table with festive treats.

Representatives of the CHARITY BALL met with children with down syndrome

Downside Up received the representatives of the international organization Charity Ball and Johnson & Johnson. They congratulated the children who are the heroes of photo exhibition and a series of # FOOTBALLVOBLAGO-videos, FIFA presentation programs in which teenagers participated in the opening videos, FIFA presentation programs in which teenagers participated in the opening of the iconic matches of the world Cup 2018 FIFA world Cup, volunteers and participants of the festival FIFA Foundation Festival 2018.

Each teenager received a letter of thanks and gifts from the Foundation. The head of the Charity ball, Ethan king, gave the children soccer balls.

Charity ball is a non-videos, FIFA presentation programs in which teenagers participated in the opening profit organization supported by FIFA. Charity ball helps socially vulnerable communities in different countries. Representatives of the organization give children soccer balls as a symbol of the game, which brings together representatives of different races and origins. All great games begin with the ball in the field.

A girl with Down's syndrome opened the FIFA World Cup

It happened! A unique event in the world of sports! For the first time in history, the World Championship in football FIFA 2018, which takes place in Russia, was opened by Angelina Makarova, a 12-year-old girl with Down Syndrome. Trust fund "Love syndrome" as an accompanying judge went on the field with captains of national teams and together with the arbiter defined the roles teams of Russia and Saudi Arabia in the opening match of the world championship.

Angelina studies in the 5th form of the Moscow school, she is actively involved in sports. She has a second youth category in swimming. Lina is the winner and prize-winner of all-Russian and city competitions for people with Down's syndrome in the category of LIN, the prize-winner of the Special Olympics games in individual standings on the short track. Angelina loves football since childhood. Twice a week she goes to the football team, where dozens Other children with Down's syndrome under the leadership of Alexander Sergeevich Makhov, dean faculty of physical culture RSSU, are engaged in football.

For 2 years the social program FIFA "Football for Hope" in our country supports the education of children and adolescents with Down Syndrome of this game. Football teams for children with Down syndrome - the first Downside Up, Love Syndrome and Russian State University.

Earlier, Angelina became the heroine of the photo exhibition # FOOTBALLVOBLAGO, which now takes place in International Airport "Sheremetyevo" and will finish on July 31. She and the other guys with Down's syndrome from the football team became the protagonists of the photo exhibition along with the players from the Russian national team and several football clubs, football legends, coaches and sports commentators.

The exhibition is held within the framework of the All-Russian Charity Project # FOOTBALLVOBLAGO, based on the idea of ​​the social importance of football, its developmental and unifying mission. The funds raised during the project will be used to create football in the regions for people with Down's syndrome and the organization in 2019 of open competitions on mini- football in Moscow.

“Downside Up Charity Fund” has joined the Agreement of Supporting people with different mental health conditions

Press conference devoted to the launch of World Autism Awareness Month has been held in Moscow. The event was attended by a number of heads of foundations supporting people with different mental health conditions, particularly Anna Portugalova, Director of the “Downside Up Charity Fund”, Lubov Arkus (“Solution in Saint Petersburg”, “Anton is nearby”), Natalia Vodianova (“Naked Heart Foundation”), Natalia Zlobina (“Solution in Belgorod”), Ivan Rozhansky (“Life Way”), Avdotia Smirnova (“Solution”).

The main result of the joint meeting is signing of the Cooperation Agreement which will allow better involving government and society in solving problems of people with mental disabilities.

Anna Portugalova, Director of the “Downside Up Charity Fund”: «It is very important for us. We appreciate a lot our colleagues’ work, and we are very glad to be partners. Our foundations have similar difficulties, common goals, and the shared audience – people with different health conditions yet with equal rights for good life. Every foundation has accumulated a vast work experience; we have much to share with each other. We are signing the Agreement to consolidate our efforts in overcoming difficulties that occur in lives of people under our care, and in creating new opportunities for them. Each of us is speaking about importance of supporting people with mental disabilities, but until now we were on our own. From now on, our many voices will merge into one which will be stronger, more confident and powerful, and which will allow us to communicate our vision of the situation, our suggestions and solutions. It’s great that we have become mature enough to do it together. The next step is to meet and discuss particular joint actions.

Among main principles of the joint work the participants marked: creating sustainable schemes that could be implemented together with government bodies (executive authorities) and their subordinate education, health care, social care, culture and sport bodies; working out set of help measures that would be provided to people with mental health conditions during their lifetime; learning world’s best practice proved by researches; reforming psychoneurological foster institutions; raising society awareness; creating the Ethic Code.

Tatiana Nechaeva, Director of the Family Support Centre, “Downside Up Charity Fund”: «Signing the Agreement is a very important step for all participants. I think that the moment is very appropriate, not just because April is the Autism Awareness Month. Down syndrome, autism, other mental health conditions have been talked about before. But now the question is being asked more often: what next? This issue is being discussed very widely at all levels: non-profit organizations, society, and government. It’s very important that every Agreement participant is using real experience in his/her work. This is worth of respect and trust.

One more important point. Now we are speaking about people with Down syndrome, autism, other mental health conditions. But we should speak and think wider – how to help and support people in any situation and condition. There are older people, people suffering from Alzheimer disease, etc. Each of us can be concerned, now or in future. It would be better if changes are powered by the society’s attitude. The more foundations that really help, the better. Out Agreement declares that non-profit organizations have valuable experience and knowledge, and can be equal partners of the government and part of people support system, as it happens all over the world”

Teenagers with Down syndrome went on a tour of the Danone factory

Teenagers attending vocational guidance and theatre workshop in the “Downside Up Charity Fund” went on a parent-guided tour of the Danone factory located in Lyubuchany village near to Chekhov.

Young guests were warmly welcomed at the factory. Before the tour, they watched the film about safety rules on the factory together with the guides Nadezhda and Ksenia. 26 participants made up two groups – one group visited production facilities while the other was invited to product tastings and master classes.

We were pleased that much attention is paid to safety and sterility on the factory. At the entrance the guests were asked to take off all jewelry; each group member was given a disposable cap, a robe, and special shoes. Then everybody washed hands with a washing liquid in a special room. It is noisy on the factory, so head-phones are a must. They protect ears and allow listening to what the guide says. Young people watched the process of packing ready dairy products into glasses and bottles.

Afterwards everybody went to the master class. The guide told why yogurts are good for health. Then came the tasting. Later on, one of the teenagers’ mom shared her impressions: “The most amazing for me was the fact that Alesha enjoyed eating fruit-flavoured yogurt. It was only with chocolate that he ate before.”

During the master class the guests could design a package and make a yogurt by their own recipe. The guests were given plain yogurt, cans with different jams, and empty bowls, they could mix different flavours and taste the result. After that, everyone created his/her own package design with the help of paints and brushes. The tour lasted for almost three hours, but this time passed very quickly.

Downside Up took a part in a conference on problems of social adaptation of people with Down Syndrome

A press conference, confined to March 21st, “World Down Syndrome Day: problems of social adaptation in Russia” took place in Moscow. Participants discussed problems of development and social adaptation of children with Down Syndrome, programs of early intervention and inclusive education, perspectives of social adaptation in Russia.

A head of the charity foundation “Downside Up” Anna Portugalova spoke on complex system of support for people with Down Syndrome and their families and shared research results made by the foundation. She spoke about problems that families face in different periods of life and discussed the need to build an effective integrated support system for people with the Down Syndrome and their families.

At the same time, Anna stressed out that over the past 10 years, there have been many positive changes thanks to the efforts of non-profit organizations, including parental ones, to the efforts of the government, and noted a positive active role of media in this process. She also warned to avoid other extreme situation: showing possibilities of people with Down Syndrome one cites successful example and may create false feeling that there is no need to create conditions for including people with Down Syndrome into society. Everyone has different possibilities and even behind the most successful example stands hard work and support of specialists.

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