Russian language site:  

Down Syndrome

You are here

Everything is like in business

Downside Up Charitable Foundation has survived two crises in twenty-two years and has helped ten thousand three hundred families with teenagers and young people with Down syndrome. The director manages the Downside Up Charitable Foundation as a company. Maybe that's why the organization survived all the crises?
- Sometimes it is believed that non-profit foundations and organizations exist according to their own laws. And in general: "Hey, they have grants!" - says Anna Portugalova, director of Downside Up CF. She quickly found time to communicate with the journalist - she extended the schedule.
- Of course, NPO have powerful specifics. We always think about the social results we are producing. The rest is based on business logic: clear goal setting, clear plan and constant analysis.
By the beginning of the 2000, Anna, a stock market specialist, was tired of traders and stocks. She devoted six years to the capital world. On the seventh, I saw an ad: a charitable foundation was looking for a financial director. Anna knew little about Down syndrome, but her old job was boring to the point of gnashing teeth, and here people with burning eyes. Since then, together with the foundation, she has been going through every difficult period. For the first time, the skills of a crisis manager were needed in 2009.
- Before that crisis, every year we watched more and more families turn to us for help. In 2008 there were one thousand ninety, the next year - already one and a half times more. We conducted group and individual classes, went online, provided psychological, pedagogical, social support - and everything is absolutely free. We have our own building. We hired new teachers. There were about forty people in the staff - they were going to expand directions. And then the crisis has come. Our budget dropped by twenty percent at once.
On the eve of the perfect storm, Downside Up hosts a sacred ceremony. The strategic core of the fund (people who make decisions) are closed in the office and think. What has already changed in the world and what will change soon? This is the first thing. Second: what is important to preserve and what can be discarded for now? If they argue about what to put on the back burner, then they always retain the team, competencies.
- The topic of supporting people with Down syndrome is still underdeveloped in our country, -explains Anna. - And twelve years ago it was unrealistic to find qualified personnel. For example, only a specialist who has worked in the foundation for at least five years will be able to advise on the Downside Up forum. - There will be no these people - there will be no support for families with special children. Therefore, in order not to lay off employees, we have mothballed expenses and slowed down the expansion of in-person services, - says Anna in a calm voice of a financier who temporarily defeated a quivering benefactor. - Then we thought: what will we offer in return? The question hung in the air: how to support more families and spend less money? Face-to-face classes are expensive and are designed for small groups. Educators began to develop an Internet forum for remote assistance. It worked like this: one topic - one family. Private problems were discussed on the network, where there were no delicate nuances. The recommendations of the experts were in the public domain. Families read them, plus colleagues from other NPO learned from Downside Up. Selected topics have received thousands of views. This confirmed that the foundation has stepped right into the Internet. Early departure to virtual is bearing fruit so far. In self-isolation, its "yield" has grown even more: Downside Up has completely switched to online. Various remote formats have appeared: parents with children with Down syndrome perform tasks at home, record the process on video and send them to a curator. Fund employees are in touch with families in Whatsapp and Zoom every day - the crisis is coming, the process does not stop.
In business, they say: crisis is a time of opportunity. In the sense that the weak leave the market, and those who do not give up and find their bearings in the new situation, live and prosper. Since 2009, Downside Up has been engaged in what businessmen call diversification of funding sources, and the foundation has been looking for new donors. We decided to develop private fundraising. Previously, it was approached in so far as. - Our topic is not clear to society, - says Anna. - It is difficult to compare it with acute targeted assistance. The child needs surgery. We need to raise funds, otherwise he will die, and if I give money, he will survive. In the case of Down syndrome, it is not easy even to explain why you should help at all. It's not a disease, it's for life. Downside Up has been looking for major corporate donors for a long time. Finding a common language with several companies is easier than with a thousand people. But companies also have difficult times during a crisis. They cut expenses through charity.
In 2009, the question of private donors came to the fore. We searched for them on different sites, among different audiences. We carried out a joint campaign with Sberbank and covered its clients. We opened a blog in the then popular “LiveJournal” - caught the eye of the network community. We attracted public people, with them - their fans. Downside Up used every opportunity to flash and draw attention to their topic. As a result, the flow of funds increased even amid the crisis. The NPO is going this way in 2020 as well.
- Even symbolic amounts in significant amounts are a more reliable support than a corporate donor. When you count on a large donation, and the company gets into a crisis and can't give anything, you suddenly lose everything at once, - explains Anna. Investors and businessmen in such cases say: "Don't put your eggs in one basket".
According to Anna Portugalova, the main skill of a director of a charitable organization is communicative, the ability to negotiate and persuade. During a crisis, you will have to talk a lot and immediately with everyone: donors, employees, parents and society. The sooner the interaction starts, the better. Then everyone is paralyzed by the fear of what is happening. - When the situation is just developing, I quickly call and write to the trustees of the fund and large long-term donors: “We are, we continue and need help more than ever. If not with money, how else can you support us?”. Now it is difficult to attract new benefactors. You go to warm, close partners. They are loyal, already yours.
And how can you prove to donors that the fund's relevance during the crisis is growing? In 2009, the director of Downside Up turned to her parents for arguments. The most initiative created an asset that communicated with the media, talked about the fund, and participated in fundraising events. Donors saw the faces of the people they help live. Downside Up has found a new voice - the beneficiary.
Eleven years later, this tool has not become obsolete. Now the management has convinced teachers to join fundraising. They collect feedback from families with whom they communicate online, asking to remove the video thank you. Materials confirming the need for the fund are distributed through social networks, a website, mailing lists.
“In a crisis, it is necessary to powerfully tell people what the foundation continues to do, how it reacts to changes and what it needs”, Anna convinces. And again, like in business: advertise yourself, when others have their ears flattened, go in the opposite direction - and people will reach out to you.
- Twelve years ago it was tight, a strong decline was in donations. Two thousand twelve and thirteen were also difficult years. Two thousand fifteen was not easy for us. For the last few years, too, when you listen to Anna Portugalova, you get the feeling that Downside Up Charitable Foundation is not getting out of crises. On the other hand, it has existed for twenty-two years, has helped ten thousand families and has overcome everything.
- I learned how to build management processes and activities, relationships in a team, manage finances in the stock market, - says Anna. - If we compare NPO with business, we win: people with non-commercial motivation come to us. We make sure that everyone who is on the team is burning with the mission. We help families and children with Down syndrome.
In crises, people unite around this goal. Non-working days have been announced now. Any employee has the right to say: "I cannot work, and you are paying me a salary". But in our team, no one did that. I just turned to everyone: “Friends, this is the situation. As you know, it is harder for families than for us. They still need our help. I continue to work and I urge you. And yes, we will face tough times, but we hope we will survive. We will fight for this".
Source: “Magazine for specialists in the field of family arrangement and prevention of social orphanhood " № 2 (10) June 2020
Authors: Anna Guryanova, editor, journalist \ Elena Maksimova, journalist

Downside Up working hours and how to make an appointment with us

Dear parents!
Our specialists are ready to provide you remote support, regardless of where you live!
Contact us - the free fund number is 8 (800) 550-54-97 (from 10 to 18 Moscow time on weekdays) or write to us at, we will give feedback definitely .
From May 1 to May 5 and from May 9 to 11, 2020, the fund has days off.
From May 6 to 8, Downside Up works on a regular schedule. These days we will hold consultations.
If you have questions about how:
- Organize daily activity of a child / teenager / adult with Down syndrome
- Organize classes at home;
- Build communication and interaction with a child / teenager / adult
- Help a child / teenager / adult regulate behavior
- Help the child / teenager / adult to be independent
- Get psychological support
- Any other requests
We will be happy to support you and your family members!
Services are provided to families free of charge.

Read "Take a Step"

Dear friends!
The next issue of Downside Up’s magazine “Take a Step” is available for reading on our website.
The regular sections “Doctor's Tips”, “Teacher's Look”, “Psychologists about Children and Parents”, “Parent Tribune” and others are waiting for you. The current issue of the magazine differs from the previous ones – parents of special children were very actively involved: mothers of many children Anna Kryuchkova and Irina Plotnikova, adoptive mother Valentina Yakovleva, blogger and mother of the “sunny” Pasha Oksana Safaryan. And even an article in the section “Doctor’s Tips” was written by the mother of a boy with Down Syndrome - pediatrician Alexandra Shasheleva. Parents also sent photos to be published in the magazine and actively participated in the survey, which was described in an interview by the head of Downside Up Strategy Department Alexander Borovykh.
Other materials of the issue are aimed at practical support for parents.
So, in an interview with dietarian Natalia Taran, readers will find specific recommendations on how to draw up a diet for children with food allergies and overweight.
Speech therapist Esmir Kazimova, who has practice in Azerbaijan and Turkey, writes about the need for speech therapy work with children in their first year of life.
In an article, psychologist Ilya Muzyukin raises an important topic. He writes about what autostimulation is, how it affects the development of the child, and how parents should respond to autostimulating behavior.
Another psychologist working in Downside Up - Vera Stepanova - recommends an interesting book to readers, which will be interesting for all parents to read.
Two materials in this issue are devoted to the physical development of children with Down syndrome. One of them is about adaptive physical education classes organized in Moscow, and the other is about the section on adaptive karate from Naberezhnye Chelny.
The magazine also published useful articles about the first books for independent reading and about the American experience in teaching teenagers and adults with Down syndrome digital literacy.
Thanks to everyone who sends us letters, photos and reviews! We are always glad to cooperate with you!
We hope that the restrictive measures related to the spread of coronavirus infection and forcing us to switch to a remote format of work will soon be lifted. And then we can send out a printed version of the magazine to all its subscribers.
Do not be sick and be in touch!

Downside Up took 14th place in Russia's first charity fund rating

The RAEX rating agency (RAEX-Analytics) together with the Association of Rating Compilers (ARC) prepared a pilot rating of charitable non-profit organizations (NPO). The rating characterizes the level of partnership potential of charitable organizations: their financial, organizational, methodological, media opportunities, as well as their authority regarding other comparable organizations.
The rating included 293 NPOs, the total amount of receipts in which in 2018 amounted to 44.8 billion rubles (the rating of fundraising charitable NPOs was 213 NPOs and 19.2 billion rubles, the rating of corporate and private charitable NPOs was 80 NPOs and 25.6 billion rubles respectively). According to RAEX, this is about 90% of total donations to organized charity in Russia.
“The rating may become one of the factors contributing to the development of this sector, which is extremely important for Russian society,” comments Dmitry Grishankov, CEO of RAEX. - This is the most convenient positioning tool for leading charities. It will also help make rational decisions for both donors and potential partners of a charitable NPO. Finally, it will contribute to increasing the transparency of the sector and solving the problem of “toxic” charity. ”
The rating included Russian NPOs, the proceeds of which in 2018 exceeded 10 million rubles, carrying out charitable activities in one or more of the following areas:
- charity medical care;
- support and adaptation of socially vulnerable groups of citizens;
- education and science;
- ecology and animal protection;
- sport;
- art and culture.
Due to the specifics of the activities, the rating did not include funds, NPOs associated with religious organizations and law enforcement agencies, local community foundations, and organizations that position themselves as structural units of international charitable foundations and use their public names. Also, the rating did not include charitable foundations created exclusively to finance individual projects or programs.
The rating was based on three groups of indicators: the scale of the activities of NPO, information transparency of the activities of NPO, public recognition and activity of NPO in the media and social networks.
More details

Time to present oranges: online promotion for the world day of the person with down syndrome

We at “Love Syndrome” Fund love oranges and good traditions very much. Our fund’s annual good tradition is to plant an orange grove by March 21, World Day for Down Syndrome.
Taking part in an online charity action # wevethoughtoforange is very simple:
1. Select the green orange with the desired donation amount and click on it.
2. Fill in the fields on the payment page.
3. After payment, your chosen orange will turn orange, and you will help children with Down syndrome and their families.
4. You can make more than one gift - there are enough oranges for everyone!

New Year 2020 in Downside Up

Bright Christmas costumes, a tree that was magically lit every day of the festive week, fairy performances, New Year's tea parties, round dances, gifts presented by Ded Moroz and Snegurochka. New Year's holidays at Downside Up Fund are for all participants of the fund's programs: from toddlers attending adaptation groups, older children from supportive education and school preparation groups, and children who come to us for occupational classes passed all week.
New Year is a family holiday, so mothers, fathers, grandparents, brothers and sisters also took an active part in all the activities of the fund: together with their children they worried about the characters in the performances, helped to go round dances, called Ded Moroz, New Year's costumes deserve special attention, which they prepared for the holiday.
Artists of the theater "Miracles under the umbrella" presented to young spectators the first tale. Their puppet show about a trip to the North Pole with a bear cub Umka and his friends is an interactive story, in which children became full participants. During the performance they were covered by a snowstorm, they saved a frozen bird, warming it with their breath, and together with puppet friends they decorated the Christmas tree.
Vladimir Fateev, actor of the “Miracles under the Umbrella” theater: - This is not the first year that we have been visiting Downside Up with our performances, because this is the most grateful audience, the kindest, and most wonderful. The guys, of course, are great fellows, they amazingly joined the play, it is simply amazing how sincerely they perceive everything that happens on the stage: they respond to our heroes, talk to them, rejoice at their successes, or are upset when they have trouble.
Lyubov Rumyantseva, actor of the “Miracles under an umbrella” theater: - The most favorite moment in the performance for us is the gratitude of the audience when they thank and hug not us, but our puppet heroes - it's great. So, we were able to help them believe in a miracle, the main artists for them are our puppet characters.
The real winter detective story was prepared for children by Downside Up teachers. Teachers are the most sensitive actors, they tried to arrange a bright and emotional show for their viewers. They helped the children look for the nose lost by the snowman in the forest. The search was accompanied by hide and seek under a multi-colored tent, a game of soft snowballs, dancing, spell “The Christmas Tree Burn!” and meeting with Ded Moroz. The New Year story for the children who will go to school next year was no less exciting.
One of the favorite components of all the matinees of the fund is a photo session with the main magician of the holiday. Understanding what children like best: talking with Ded Moroz, hugging him or receiving a gift from his hands is not easy.
For the first time this year, young members of the theater workshop of the fund, employees of the two Funds “Love Syndrome” and Downside Up and their friends performed on the same stage. New Year's skit was more like a big gala concert. The musical group “Russian Souvenir” from boarding school No. 31 opened it. Musical numbers prepared by the participants of the theater studio were replaced by poetic, dance and stage. A separate place in the concert was taken by a joint theatrical performance. The performance, based on the fairy tale “The Snow Queen”, in which the main roles were played by teenagers-studio theater workers and fund employees, was accompanied by ovation and was really liked by all the guests of the holiday. Rehearsals lasted a month, costumes, decorations - the work of a large and friendly team.
This year's New Year's theatrical skit took place on the stage of the Russian State Social University (RSSU). University staff are good friends, partners and colleagues of Downside Up and fund “Love Syndrome ”, helping to make the lives of people with Down syndrome better.
Anna Portugalova, director of the Downside Up Fund: - I want to say a big thank you to the Russian State Social University. We are doing so much good and wonderful together with the Russian State Social University. In particular, this year, colleagues made a huge contribution to the first large-scale football competitions for teams with people with Down syndrome. Now the RSSU has a training program for trainers and we wrote a book together. The university helps us all the time, we are very glad for such a fruitful cooperation.
Oksana Savkina, Deputy Head of the Organization and Admission Office of the Russian State Social University: - I watched your holiday. It is very cool, you are so happy and very talented. I would like to wish you a Happy New Year and wish you new success! We are always glad to see you.
Also, Oksana Savkina presented a kind of New Year's gift to the audience and participants - she invited the children and their parents to meet with the dean of the university, where they will talk in detail about the professions that can be obtained at the university, as well as get to know potential employers.
At the end of the holiday week, a New Year's party was held for teenagers attending daytime groups, during which the guys not only received gifts, but also created their own, played New Year's games and danced to the disco from the heart.
A busy holiday week charged everyone with a good mood and faith in miracles for the next year.
The Charitable Fund Downside Up and “Love Syndrome” Fund express special gratitude for the gifts given to the companies: Amway, Mattel, Talos Construction LLC, “Iceberry TD” company for a sweet treat to all participants of the New Year trees, Qiwi Company for a perfectly organized holiday for children and their parents and Orica CIS for creating a New Year’s atmosphere in the fund.


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.


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.


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.