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DOWNSIDE UP HAS BECOME FINALIST OF RUNET AWARD IN THE NOMINATION “FACEBOOK COMMUNITY”

On December 12, 2019 a festive ceremony of XVI National award prize distribution for contribution to the development of Russian segment of Internet “Runet Award” took place in the Pashkov’s House on Vozdvizhenka street. Downside Up was competing in nomination “Facebook community of the year” and became one of top-10 internet projects. Downside Up took the 2nd place by the results of experts’ council vote.
“Runet Award” is the most important award in Internet in Russia. It is a national award in the area of high technologies and Internet which is conferred to the leading companies for their prominent merits.

ANNA PORTUGALOVA, DIRECTOR OF DOWNSIDE UP FOUNDATION, BECAME ONE OF THE WINNERS OF THE CONTEST OF PROGRAMS AND PRACTICES IN THE SOCIAL AND CULTURAL REHABILITATION OF DISABLED PEOPLE

More than 250 citizens and organizations who have successfully implemented socially important projects in the area of social and cultural rehabilitation of disabled people in 2018-2019 took part in the open contest of programs and practices. The main goal of the contest is to promote active involvement of disabled people in social life, development of their creative and intellectual potential, formation of socially active personality.
Requests were gathered in seven topics disclosing main tasks of social and cultural rehabilitation of disabled people. Director of Downside Up charity was awarded a second degree diploma in the nomination “Creativity without borders”.
Festive ceremony of awarding the winners took part in All-Russian kids center “Orlenok”. The awards were handed by the Head of the Commission of the Civic Chamber of the Russian Federation on support of families, mothers and children, Honoured Artist of the Russian Federation Diana Gurtskaya.
The contest was held by the Commission of the Civic Chamber of the Russian Federation on support of families, mothers and children, the Center of Social and Cultural rehabilitation of Diana Gurtskaya with the support of Ministry of Labor and Social Care, Ministry of Education, Ministry of Culture, Department of Labor and Social Care of Moscow.

DOWNSIDE UP TOOK PART IN THE ANNUAL GENERAL ASSEMBLY OF EDSA

Annual general assembly of European Down sy гтшndrome association (EDSA) takes part in Rome in November. The topic of this year’s meeting is “Assisted living of people with Down syndrome”.
EDSA unites organization from European countries striving for making life of people with Down syndrome and their families better. One of EDSA’s goals is to share best practices and to support each other with information and experience.

This year the annual assembly gathered 31 people representing 31 organization from 25 countries. In the course of the assembly meeting they discussed experiences of European countries in assisted living project.
Tatyana Nechaeva, director of Family Support center, and Yulia Lentieva, head of the program of assisting school children and teenagers with Down syndrome, spoke about the activities of Downside Up.

DOWNSIDE UP EXPERTS TOOK PART IN THE II ALL-RUSSIAN CONFERENCE “BEST PRACTICES AND ROLE OF NGOS IN TAKING CARE AND WELL-BEING OF CHILDREN”

The II All-Russian conference “Best practices and role NGOs in taking care and well-being of children” was organized by the Fund of Presidential grants.
Aleksander Borovykh, strategies department of Downside Up, gave a speech at the discussion panel dedicated to skills and best practices of NGOs in social results evaluation, analisys of charities’ beneficiaries feedback.

Aleksander Borovykh shared his experience and workings of the foundation in evaluating social results of the foundation’s activities.
The three-days conference gathered more than 150 representatives of NGOs and experts in the area of social orphanhood, taking care of children and supporting them. More than 6000 participated in the conference virtually.

DOWNSIDE UP HAS ORGANIZED NEW REFRESHER COURSE FOR PROFESSIONALS

Downside Up foundation organized a refresher course for speech therapists. The 5-days long course “Development of speech of children with Down syndrome of pre-school age” was visited by more than 30 professionals. Some of them are young professionals and others are already experienced specialists who came from Moscow as well as from different regions of Russia. More than 500 people visited the course virtually.
For the first time, this year the course was more intense than usually and took only 5 days. This idea was boosted by the results of the poll of participants of educational program led by the strategies department of the fund. The pollees told that they would prefer a few-days course instead of coming for tutoring once a week during one month. Therefore educational center of Downside Up decided to change the format of their courses

OPEN NEW POSSIBILITIES WITH “MAKE A STEP” MAGAZINE

The running number of the Downside Up’s bulletin – “Make a step!” magazine – was published. This number contains several articles on parental experience in which mothers of kids with Down syndrome share their emotions about birth of a special needs baby, their thoughts about difficulties of caring about such babies, their breeding and education and also their successful ideas about this. What can help to make early intervention studies in kindergarten more effective? What can parents do? What is the best way to prepare a kid for school and what is the best way to choose a school? Recommendations and advice from parents and authors of the magazine based on their personal experience can be successfully implemented by other families in similar situations.
In the columns “Psychologist’s point of view” and “Psychologist about kids and parents” there are articles from highly-appraised and well-known specialists from Downside Up Polina Zhiyanova and Vera Stepanova. Also the topic about yoga therapy for special needs kids was for the first time presented in the magazine.
The regular column “Doctor’s advice” contains interview with a dentist from Rostov-on-Don Inna Pestryakova who possesses a unique experience of treatment and preventive care of dental disorders of children with Down syndrome – she has treated about 60 kids with Down syndrome.
Articles of the column “Special Arts” are dedicated to two important questions: in what way art may influence public opinion about people with Down syndrome and in what way we may help kids with Down syndrome to unlock their artistic potential.
The number also contains an interview dedicated to the 10th anniversary of Consulting Forum of Downside Up, an article about participation of teenagers with Down syndrome in FIFA football festival, a story about a tour of inclusive performance group “Dancing House” in Bulgaria and an overview of new books.

THEATRE WORKSHOP OF DOWNSIDE UP FOUNFATION HAS LAUNCHED ITS SEASON WITH SUCCESS

Our actors have performed the “Small Prince” play in the Cultural Center of Hotskovo town with success. The actors have grown in professional area which was highly estimated by the teachers, the parents and the audience. The latter applauded for a long time and cried “Bravo!” and gave the following comments:
- «Spectacular, magic and very touching play and performance of the actors».
- «We thank very much people who organized and initiated this wonderful creative trip, who intelligently chose the play for your heartiness, warmth and professionalism! ».
- «Amazing play, the highest level of stagecraft! Admiration! Thank you very much for invitation and for organizing the perfomance».
- «Wonderful guys!»
The head of the theatrical workshop Nikolay Ilnitskiy says that the freedom of an artistic idea, attitude to a kid as to a peer, to an artist and a desire to disclose creative potential of every child are the basic idea of the theatrical workshop.

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.

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