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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.


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 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


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.


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.


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.


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:

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!

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.