Downside up Charitable Fund July 2017 - June 2018 DEAR FRIENDS! OWERVIEW of the YEAR's RESULTS

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Downside Up Charitable Fund July 2017 - June 2018 DEAR FRIENDS! OWERVIEW OF THE YEAR'S RESULTS

4 966 7 208 families of children with Down individual face-to-face and distance sessions and syndrome are registered in the consultations were Fund’s programs Anna Portugalova, conducted for children and 1 063 Downside Up Director their families group classes were held for children and their families Throughout the year, Downside Up has We are very pleased that we have more and devoted considerable attention to the more partners in different regions both development of a system of continuous among NGOs and among government support for people with Down syndrome from agencies. After all, it is only by working birth to 18 years and above. together that we can ensure that in every corner of our country, families with special Naturally, we started at home with the children can find support. 38 11 825 26 850 children and families already registered with groups working with children copies of books and journals copies - the total circulation of Downside UP. Based on what our families We kindly thank the active participants of our told us our experts made changes to and families published by the Fund and sent books and journals published by programs and projects - children and their to families the Fund programs already in existence ensuring the parents - as well as all our partners, family gets the support it needs for every colleagues and donors for their contribution stage of its life. to our common cause of improving the Moreover, together with our partners, we spent quality of life for people with Down 3 610 332 much time and effort in promoting the idea of syndrome! creating a system of long-term support for a copies of books and journals published by the Fund new publications appeared at Downside Up and sent to experts Web portal family raising a child with Down syndrome at the national level. 78 115 1 384 5 933 training events were specialists received listeners at face-to-face registered listeners at held for professionals, official certificates of training sessions online training courses parents and NGO enhanced qualifications members

DOWNSIDE UP 1 828 35 152 4 784 CHARITABLE publications on Down charity and companies supported private individuals FUND’S syndrome, and about fundraising the Fund with made donations To improve the quality of "Downside Up's" and campaigns were donations, free goods MISSION "Syndrome of Love’s" held and services life for children with Down activities appeared in the mass media syndrome in Russia 111 260 239 108 222 057 rubles - the total amount of funds raised during rubles – the total amount spent during the the reporting period (including pro bono services reporting period (including pro bono services and Downside Up is a socially-oriented non-profit organization "Downside Up Charitable Fund", certificate of state registration No. 7714011745 and goods) goods)

Annual Report Downside Up Charitable Fund, 2017–2018 1 BRIGHT EVENTS OF THE YEAR This is a list of people who make a positive theater genre вЂњAlice's DreamвЂќ based on the contribution within the public sphere, amongst them fairytale by Lewis Carroll. The festival had over 130 philanthropists, human rights activists and different creative teams showcasing their work. Eight, July 2017 December 2017 environmentalists. Anna’s contribution was as including Downside Up Theatre Studio, received Downside Up published a ‘’Benefactors: Helping the Elderly, Children, People outstanding awards. new resource book for with Special Needs and Socially Vulnerable Segments parents and specialists "I Can of the Population’’. Do Everything!". The author of the book is a leading March 2018 May 2018 Downside Up methodologist Downside Up organized the round table: "Comprehensive Polina Zhiyanova. Inter-agency Long-term Support for Families with Children Based on the most up to date approach, this resource and Adolescents with Down makes recommendations on the development of the child. Syndrome and Other It aims to develop life skills and competencies necessary Learning Disabilities". It was for the successful socialization of children with Down On December 1, the Fund successfully held an held in the Federation syndrome in contrast to previous approaches which were international conference «People with Down Syndrome Council of the Federal aimed at the treatment of developmental defects. and Other Learning disabilities: Right for the Future” Assembly of the Russian at the Public Chamber of the Russian Federation. The Federation on Social Policy. September 2017 purpose of the conference was to make The round table discussed recommendations to further develop an inclusive The start of autism awareness month saw the opening of the need to create a system of long-term support for support system for people with Down syndrome and a conference dedicated to supporting people with people with learning disabilities in Russia. A other learning disabilities. The event was attended by learning disabilities. The main event at the conference significant outcome resulting from the round table over 300 participants from 60 cities: parents, NGO was the signing of an agreement to cooperate, by was a brochure prepared by the fund. Participants representatives, specialists, officials, and experts. The Downside Up and five other Russian charitable funds: proposed legislative initiatives that were passed to conference was very well received and was honored ‘’Naked Hearts”, “Anton’s right here”, “Life Path”, “Exit”, the Federation Council. The round table was held as with excellent reviews. “Exit in St. Petersburg” and “Exit in Belgorod” funds. The part of a project funded by the Presidential Grants agreement will help raise awareness of the difficulties Foundation December 2017 people with learning disabilities face in Russia. June 2018

On September 3, nine girls from the Iron Matryoshki team took part in the charity event #swimmingvoblago of "Syndrome of Love" Fund. Swimming over 77km for more than 12 hours the “Matryoshki” and other April 2018 participants raised a total of 966,177 rubles. This money went towards funding a team of Russian swimmers to attend the World Swimming Championships INAS (International Federation of Athletes with Intellectual Impairments) in Mexico. The competition was attended by 3 athletes with Down syndrome, one of them - Anastasia Petrova who won bronze for the 200m Family sports festival "Open Gates Day" was held on butterfly. December 2. The festival opened with a warm-up conducted by Alexander Makhov, Dean of the Faculty of Physical Culture of Russian State Social University, November 2017 Russian Paralympic Committee member and the head New textbooks on sex coach of football teams for children and adolescents On the eve of the FIFA World Cup 2018 in Russia, education for teenagers with Down syndrome. Over 100 families attended and "Syndrome of Love" Charitable Fund organized a photo with Down syndrome were had a full day of family orientated sport and fun. exhibition #FOOTBALLVOBLOGO held at Sheremetyevo published - “I am Growing International Airport and on Chistoprudny Boulevard. Up. Book for girls" and “I am December 2017 The main stars of the exhibition were a football team Growing Up. Book for boys”. Downside Up Director, Anna Downside Up Theatre Studio received outstanding comprised of children and teenagers with Down Written by Downside Up Portugalova was acclaim at the Open Festival of Children and Youth syndrome, as well as famous football players and sports psychologists A.E. Kirtoki acknowledged to be one of Theater Studios “Tochka, Tochka, Zapyataya”. This commentators. The project was implemented using a and V.A. Stepanova, the simple and accessible language the TOP 75 most respected festival is viewed by the Department of Education of grant from the President of the Russian Federation for answers most of the questions that teenagers ask about people people of the country Moscow as one of Moscow’s culturally significant events. the development of civil society provided by the sexuality and relationships. according to the magazine The creative team of the Studio under the direction of Presidential Grants Foundation. ‘’Russian Reporter’’. Nikolai Ilnitsky, staged a performance in the shadow

2 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 3 SUPPORT TO FAMILIES RAISING PRINCIPLES OF WORKING WITH NEW IN SUPPORT TO FAMILIES CHILDREN WITH DOWN SYNDROME FAMILIES Downside Up successfully implemented the one window principle making communication with specialists and Psychological, pedagogical and • All the programs are provided free of charge. navigation through the website easier for families. social support of families has Families can address specialists on social support with • Parents receive support from a child’s birth and even been and remains the main focus questions at the online-chat on the main page of the of the Fund. As in all previous before it – from the moment of finding the risk of expecting a child with Down syndrome. website. Examples of queries include: difficulties years, the number of registered getting children admitted to kindergartens, arranging and supported families continues • Downside Up programs are based on a family- consultations with doctors, planning the educational to grow. The geography of centered model, meaning we support the whole family, pathway of a child or organizing leisure time. The not just the child with Down syndrome families covers all regions of the online-chat portal allows families to ask any questions Russian Federation, as well as • An interdisciplinary approach to family support at that they have. some countries of the former each stage: parents and children receive support from USSR, in which Russian-speaking psychologists, teachers and specialist on social support. families live. • The goal of the specialists' work is to help the child’s development from an early age, and for his parents to learn how to support him so that he can maximize his potential and acquire the necessary competencies for life in society and as he matures. This in turn will lead him to finding a job and a place in life according to his interests and abilities.

Consultations of specialists on social

Number of families in the Downside Up database as of June 30th of each year support 54 83 127 190 253 345 438 505 639 837 1047 1422 1855 2377 2942 3533 4341 4965 5457 6555 7208 Throughout the year 52 face-to-face and 666 distance consultations to families were provided by specialists

Online-chat at the Fund’s website

From December 2017 528 users of the online-chat

received answers to their 795 questions.

1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018

Geographical Volga Federal District, 15% Moscow, 15% distribution of registered families Central Federal District (excluding Feedback Siberia Federal District, 9% Moscow and Moscow Region), 10% as of June 30th, 2018 Urals Federal District, 6% “If it were not for you, I would not be able to “I always say THANK YOU to the Fund. You South Federal District, 9% Ukraine, 5% assess the scale of the possibilities! Both for the changed my life. And I dream that you change

Far East Federal District, 3% potential of my child, and for my own. " the life of all those in need. You gave me a Moscow Region, 9% North Caucasian Federal District, 3% landmark ” L.I. Sakhapova, Chairman of NGO " So-deystviye", Ufa, North West Federal District, 8% Nastya's mother Crimea Federal District, 1% Other Countries, 3% E. Kartava, Denis's mother, Moscow

Kazakhstan, 2% Belarus, 2%

4 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 5 TYPES OF SUPPORT TO FAMILIES AND SERVICES - Creative studious

STATISTICS FROM 2017-2018 SCSDEMIC YEAR 2 groups, 1,5–3,5 years Music for babies 63 classes, 40 children 4 groups, Group pedagogical and psychological sessions 3–6 years Yoga 140 classes, 20 children 6 groups, 7 months – Parents-children interaction group/ 29 sessions 2 years “Sandpit Sessions” 48 families attended 3–7 years Musical-rhythmic lessons (dance) 164 classes, 51 children Social adaptation group (Helps babies learn basic communication skills and how 5 groups 1 group, 156 lessons 1,5 – 3,5 years to interact with each other and adults 7–11 years Creative development 19 classes, whilst playing games and in other social 80 children situations. Parents act as assistants.) 7 children 2 groups, Supportive learning group (Helps children 9–16 years Theatre studio 58 classes, learn to participate in group classes, 6 groups 43 children games, everyday situations 3,5–6,5 years 161 lessons independently and without their parents’ 56 children 1 group, support in order to communicate better 16–18+ years Animated cartoons 26 classes, with their peers). 6 teenagers 2 groups 1 group, 6,5–8 years Get Ready for School group 62 lessons 16–18+ years Media laboratory 22 classes, 17 children 5 teenagers Supportive learning group for first-grade children (Involves children in social and 2 groups 7–13 years everyday situations, broadens their 54 lessons outlook, communication and interaction 26 children Group psychological sessions for parents skills). 9 meetings, 3 groups 0*–1,5 years Group meetings focusing on coming to terms with the emotions 56 families 13–16 years Psychological support group for teenagers 72 lessons associated with giving birth to a child with Down syndrome 58 teenagers 1,5–8 years Parent support classes (for parents of both children and 424 meetings 1 group teenagers) 28 lessons * - including families expecting or with a high chance of expecting a child with Down syndrome 16–18+ years Employment support and guidance 16 teenagers details – page 10 Information and methodological support

Welcome pack of methodological materials sent at 4501 books sent to 0–7 years Individual support registration with the fund 702 families CONSULTATIONS 4 mailing by speech therapist , 0–1,5 years Electronic mailing «VyrastayKa» 408 visits, 580 families 0–1,5 years At home consultations (home visits) psychologist, specialist 138 families in early development, as 7484 copies of 0–18+ years Electronic mailing of «Take a step» journal Face-to-face consultations in 1770 well as consultations of journal sent 0–12 years Downside Up consultations 2-3 specialists at the same time 0–18+ years E-library at Downside Up website 2773 materials 1404 3747 supporting 0–7 years Online consultations (forum) consultations, 0–18+ years Useful addresses at the website organizations 490 families 8 meetings Remote expert advice sessions (phone, 401 3–8 years Parents’ club 0–12 years 143 participants email) consultations 2 mailings Electronic mailing «I Can Do Everything!» Psychological consultations (face-to-face, 265 7–18 years 0–18 years 1900 families phone, email, Skype) consultations

Social care teacher consultations (face- 718 Events and festivities 0–8 years to-face, phone, email) consultations 56 events and 3–18 years festivities 995 families

6 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 7 EVENTS AND ACTIVITES

Group lessons for early-aged children "Musical Actors from Downside Up Theatre Studio got applause Fun". after the show.

Graduates of preparatory groups at the festival dedicated to the end of classes.

In the supermarket, participants from 7+ group. Together with the teacher, the young people made a list of products for cooking a salad, chose and paid for the With Russian Santa Claus – Ded Moroz and Snow products at the checkout independently. Maiden. New year's holiday in social adaptation groups.

March 21, the World Down Syndrome Day, Downside The New Names Foundation held a concert visiting Up's pupils at performances of the Russian Puppet Downside Up. Theatre in the Gogol House.

Representatives of schools in Saudi Arabia attended group music classes for early-aged children. Meeting Florence and Veronique Garrett with parents Pupils of "Downside Up" at the concert “Spring Voices” in the Gogol House. raising children with Down syndrome.

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Annual Report Downside Up Charitable Fund, 2017-2018 EMPLOYMENT SUPPORT AND GUIDANCE GROUP EDUCATIONAL ACTIVITIES • 16 teenagers and young adults with Down syndrome along with members of their families participated. Downside Up has been working for several years as the foremost Education Centre in Russia providing training and • There were: methodological support to professionals who are working with children with Down syndrome and their families. 28 group classes on employment support and guidance, Educational activities are also available for parents. 6 offsite employment support and guidance events, 3 seminars and 31 consultations for employees. DURING 2017-2018 ACADEMIC YEARS WE CONDUCTED: • 2 young adults now officially work; 3 are in the process of being trained. • 2 participants of the employment support and guidance program continue to study at college. Number of Number of Five courses of enhanced qualification for teaching hours certificates of specialists: enhanced Group sessions qualifications Held to motivate teenagers and young adults to go out to work, to allow them to experience a broad variety of Family-centered approach of support and current methods of support for 1. interests and to help them understand what skills and future employment they would like to have. families with a child with special needs. 18 32 Support for families with early-aged children with Down syndrome. How to 2. Off-site events provide it and what it includes. 40 21 These events help families choose the direction their child with Down Support for families with school-aged children with Down syndrome. How to 3. syndrome will take after graduating from school. During the reporting period provide it and what it includes. 60 36 six off-site employment support and guidance events were conducted: Psychological support for families of children with congenital developmental 4. • Visiting and getting to know how supermarkets operate. defects and genetic abnormalities. 32 14 • Visiting the Center for social rehabilitation “Turmalin” Motor development of early-aged children with Down syndrome. Method of coaching • Excursion to the Scientific Laboratories of the Polytechnic Museum. 5. the motor development of young children with Down’s syndrome P. Lauteslager 30 12 • Open-Door Day in Technological College №21. • Excursion to “Danon” (producer of the famous French youghurt) plant. • Volunteer Day in Center for Pet Nutrition “Mars” Inc. AND ALSO:

OUTCOMES FROM THESE EVENTS: 12 seminars, for 511 participants.

17 seminars with live coverage to all interested parties. During the live coverage there were 769 active listeners.

Totally 1963 listeners registered to watch the live coverage and had the opportunity to watch the replay.

Masha became an intern in “Qiwi” marketing department Arina and Ivan became young interns in “Decathlon” sporting goods shop

Number of Number of Number of Four series of webinars for specialist, webinars active registered parents and NGOs: participants participants* Pedagogical support for early-aged children with 1. Down syndrome. 10 853 1937 Anton became staff member of Methods and approaches for working with school-aged children 2. Grisha continues to work in Dasha received on-the-job Scientific Laboratories of the with Down syndrome and other learning disabilities needs. 7 355 1017 “Voerman”: training in "Syndrome of Love" Polytechnic Museum: Modern approaches to understanding social adaptation of 3. students with Down syndrome. 2 82 213 Feedback 4. Organizational development of NGOs. 7 170 438 “It is necessary for a person with a learning disability to We want to communicate, to dress beautifully, we want to be * -registered user have an opportunity to watch the replay of webinars. work in order to fulfilled, to feel a part of society, and useful to society. After all, work is a part of life, and we want not some sort of “offshoot”. So people can see us and to LIVE, not to exist.” At the end of each seminar/ course participants received questionnaires. Totally 268 completed questionnaires collected understand us, to realise we are the same as other during the year: 100% participants said that the content of the seminar was useful for them; teenagers. Arina's mother 94% gave the highest score – «five» - as the evaluation of the seminar/course.

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Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 Course Number of Number of PUBLISHING ACTIVITIES Eight courses posted on the Downside duration participants, per participants in Up website: (hours) year the process

Modern strategies of family support. 6 52 27 During the reporting period we published Psychomotor profile of development of children with Down syndrome. 6 61 26 Journals: Overall circulation Child development in his/her familiar surroundings. Competence- based approach to early support program implementation. 8 10 10 2 issues of «Take a step» journal for parents 7350 2 issues of «Down Syndrome. XXI Century» for Family-centered approach of support for families having a professionals 3000 child with special needs and approaches to family support. 16 13 9

Motor development of early-aged children with Down Circulation syndrome. 6 21 39 4 new teaching manuals: Spreadsheet of skills and competences, "I Can Do Feeding within speech therapy activities. 6 28 18 Everything”. Teaching manual for parents and specialists 1400 Cognitive development of early-aged children with Brochure «I am Growing Up. Book for boys» 1000 Down syndrome. 6 19 18 Brochure «I am Growing Up. Book for girls» 1000 Diary of the young child’s development. 6 14 0 Brochure «Comprehensive System of interagency and Interdisciplinary Long-term Support of a Person with Other Learning disabilities”: Materials of International Conference 500 “People with Down Syndrome and Other Learning disabilities: All Downside Up’s materials, educational and awareness raising are posted on the Right for the Future” informational Internet-portal of the Fund: Circulation Internet-portal for parents and specialists in 7 manuals reissued and printed additionally: 2017-2018 academic year: Brochure «Down Syndrome. Facts» 3000 8 180 Brochure «A Child with Down Syndrome is Born: Talk to a Psychologist» 5000 contact details of families 20 380 with children with Down Book «Cognitive Development of Early-aged Children syndrome on the 3000 unique average monthly with Down Syndrome» users Interactive Map, allowing parents to communicate Brochure «A Baby with Down Syndrome» 400 with each other The book "Formation of the Basic Motor Skills for Children 1 460 with Down Syndrome" 400 unique average daily users 2 773 The book «Formation of Communication Skills and Speech for Children with Down Syndrome» 400 materials in e-library The book «Formation of Communication Skills and Speech for Children with Down Syndrome. Manual for parents” 400 12 154 3 747 registered users contact details of Distributed during the reporting period: Feedback organizations, supporting families with children with “Of all the professional periodic journals I read, ”Down Down syndrome on the Interactive Map Families received: 4501 copies of published books and Syndrome. XXI Century” is the only journal for which I have 7324 – journals. created a separate electronic database with links.”

I. L. Ryazanova, teacher at the private educational institution of Specialists received: 1945 copies of published books additional professional education “Social School Caritas", St. Petersburg Feedback and 1665 – journals “After the seminar I has a feeling of “preparedness”. Substantive, understandable “I regularly read your books, look at the table of contents, on and practice-oriented ” motor development, speech development. These books have D.V. Zeleneva, psychologist, “The Children of Moscow.Ru”, Moscow been very helpful especially for the early stages of development.” S. Snetkova, Artem's mother (3 years), Moscow “Thank you for the seminar! Very accessible and clear! I am implementing the manual into my work with complete confidence! ” D. V. Klets, Methodologist, Speech Therapist, City Psychological and Pedagogical Center, Moscow “We always look forward to receiving the journal ”Take a Step”, we read and re-read the articles several times. We even give recommendations to the rehabilitation center.” "Absolutely fantastically organized webinars!" Timofey's mother (6 years), Volgograd region I. A. Grushina, speech therapist, City Psychological and Pedagogical Center "Mitino", Moscow

12 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 13 ANALYTICAL WORK SPECIAL PROJECTS:

This area includes evaluation of the quality of the Fund's programs, as well as studies of various aspects of the current situation regarding Down syndrome in Russia. The information collected is used to improve the quality of the PEOPLE WITH DOWNSIDE SYNDROME: RIGHT FOR THE FUTURE Fund’s activities, when planning new programs, as well as to inform the public sector and NGOs. During the reporting period we conducted: In the framework of the project supported by the To this end, Downside Up gathered and summarized the Presidential Grants Fund, Downside Up held an views of Russian and foreign experts. The information Survey of parents’ associations and NGOs, Survey of families, registered in Downside international conference and round table aimed at was shared with the relevant ministries and government supporting families of children with Down Up and living in the Russian regions defining recommendations for the development of a departments, and regional leaders. The outcome was syndrome in the Russian regions system for supporting people with Down syndrome and positive. One example being in Primorsky Krai, where the other learning disabilities , as well as their inclusion in Department of Health Care adopted an order to improve We conducted a telephone survey of 29 parents’ This survey was conducted by phone using Downside society in Russia (see details of events on page 2-3). the provision of medical care for children with Down associations and NGOs from 25 Russian regions. These Up’s database of families. To make it more syndrome. organizations have been working in the regions from representative it was based on a random statistical between 1 to 26 years. Each organization supports sampling with the help of a random number generator. between 10 to 370 families of children with Down We collected 207 questionnaires from parents of children syndrome and other special needs. from 0 to 17 years old from 63 regions of the Russian The key targets of the survey were: to learn what are the Federation. main problems families of children with Down syndrome The key targets of the survey were: to learn from where face in the Russian regions at present and to understand families from the regions receive educational and social the relevance of distance services of Downside Up for services and to what extent they are satisfied with them, families from regions. to evaluate the main needs of these families and to collect parents’ impressions about availability of Downside Up services. The information and feedback collected is being used to improve the quality of the Fund’s activities and for planning new programs and projects.

The most frequent problems that Do not attend educational institutions: families in the regions face: Feedback “It was a great international conference, it was very nice that “I think that the regional policy of the fund is very important 100% — school education, mainly - 16% school-aged children (3-7 years), inclusion; people who we had read about or whose research we had heard because the situation is different everywhere. Here, for 21% school-aged children (8-17 years). about on the Downside Up website spoke here. It was interesting example, I heard a lot of useful information from other reports, 85% —lack of information for parents to listen to the experiences of foreign colleagues, about and I have already noted what should be done. I know for sure on their rights and available support. inclusion, about how it developed in their countries, because that the fund will help me if there are any difficulties.” that is the direction we are taking now.’’ Elena Nikolaeva, head of “Protection of Mother and Child’s Health” From 33% to 51% % children of different Svetlana Skoropostizhnaya, NOOO "Innovation Centre in the XXI – counselling and diagnostic center, city of Yekaterinburg age groups do not receive free century with 21 chromosome "Siyaniye", Nizhny Novgorod According to the information received from the surveys rehabilitation services. DEVELOPMENT OF NGOS IN THE REGION Downside Up believes that only through partnership with Furthermore, with the grant awarded from the regional partners it can significantly improve access to Presidential Grants Fund, between December 2017 and THE SYSTEMATIC APPROACH IN DOWNSIDEUP UP ACTIVITIES psychological and educational services for families having June 2018, Downside Up supported 9 regional partners, children with Down syndrome. Therefore, our fund is (parent associations and NGOs) working in Kirov region, Downside Up is guided by a systematic approach in its work, this ensures the Fund's mission is fulfilled developing a network of partner regional centers for Sverdlovsk region, Irkutsk region, Volgograd region, people with Down syndrome and their families. Omsk region, the Republic of Bashkortostan, the Altai With the support of the Ministry of Economic Development and Stavropol Territories. 7 webinars and 5 working Analytics Directions of work Social result Social effect Fund's mission of the Russian Federation, a program aimed at developing meetings were held for the partners. Downside Up’s the organizational and financial sustainability of regional website regularly publishes news from the regions, since Monitoring and Support programs People with Down Social adaptation evaluation of for families with syndrome and their and integration of NGOs, providing direct services to children with Down February 2018 over 70 such items of news have appeared IMPROVEMENTS programs children with families have the people with Down syndrome and other special needs in their regions was on our website. A total of 3590 books and 36 "Let’s Start Down syndrome competencies for syndrome into IN THE QUALITY International and successful society OF LIFE FOR implemented and completed in December 2017. Within to Talk" and "Numicon" manuals were sent to regional domestic development CHILDREN Methodical and the framework of the project, representatives of NGOs partners. Partner organizations provide facilities that experience WITH DOWN educational Improving the Prevention of SYNDROME attended Downside Up training in two areas: the allow families to access Downside Up’s information activities quality of social orphanhood IN RUSSIA Needs analysis professional of children with organizational development of NGOs and the replication portal. As a result, more families are receiving crucial support for people Down syndrome of the experience of conducting mass charitable events information about the specifics of their child's Awareness raising with Down Analysis of the syndrome following the example of the project CHARITY SPORTS. A development as early as they can. situation total of 28 NGOs from 26 regions have benefitted from the Increase tolerance and awareness of program. Down syndrome in society

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Annual Report Downside Up Charitable Fund, 2017-2018 CHARITY SPORTS in the regions «SYNDROME OF LOVE» FUND'S ACTIVITIES

11 3 000 1 500 000 «Syndrome of Love» - is not only «CHARITY SPORTS» events were 3 000 participants rubles raised about people with Down syndrome held by NGOs partners in 8 regions of the Russian Federation The Charitable Fund "Syndrome of Love", established by Downside Up, began its work in June 2016. The main objective of "Syndrome of Love" is to All funds raised remained with partner NGOs in the regions and were sent by them to support program for people raise funds for ongoing and new programs of Downside Up Fund, with Down syndrome. supporting people with Down syndrome, as well as awareness raising The development of all-Russian project "CHARITY SPORTS" allows our NGO partners from the regions to implement activities aimed at breaking down the prejudices. successfully their projects. Irina Menshenina CEO of "Syndrome of Love" • September 2017: Track-and-Field runs "CHARITY SPORTS" in Nizhniy Novgorod, Omsk and Ryazan; • February 2017: Charity Ski Race "CHARITY SPORTS" in Kirov and Omsk; June 20, 2018 Charitable Fund "Syndrome of Love" celebrated its second birth day. • May-June 2017: Charity Runs "CHARITY SPORTS" in Kirov, Omsk, Irkutsk and Bryansk. During two years of its existence the organization has confidently taken its place among NGOs and won the respect of colleagues and partners. At the same time a bright and meaningful name has resonated with hundreds of families raising children and adolescents with Down's syndrome. The number of those who are discovering ‘’Syndrome of Love’’ grows every day. These are true and loyal friends who are passionately involved in the activities of the young "CHARITY SPORTS. Kids" INCLUSIVE VOLUNTEERING organization. Irina Menshenina, CEO of «Syndrome of Love" Fund, summed up the work and talked about future plans.

Football for children with Down As of the end of June 2018, "Syndrome of Love" fund had 133 volunteers, including 20 volunteers with Down syndrome. syndrome. Over the past year, the participants in the project took part in more than 10 major sports and mass Within the framework of the program 260 mini-football events. The most notable examples are: training sessions for 40 children with Down's syndrome of 6 years and above were conducted, and a manual • Participation of volunteers in FIFA events. Three young "Mini Football for Children with Down Syndrome" was adults with Down syndrome took part in the volunteer published. The participants took part in the friendly program of the FIFA festival, which was held in the matches of the project "CHARITY SPORTS" and events of framework of the World Cup. friendly organizations. In the regions, football teams for children with Down syndrome were organized. Young adults with Down syndrome took part in the events of • Three Volunteers with Down's Syndrome helped to the FIFA World Cup 2018. to organize the Vedomosti conference "Charity in Russia" held on March 5, 2018.

• 35 volunteers, including those with Down syndrome, helped to seat spectators in the Great Moscow State Circus at Vernadsky prospect on November 24, 2018. Before the presentation, the participants in the project were given Individual Volunteer Service Record Books, equipment, commendations. "It was at the time when the FIFA 2018 World Cup was taking "Of course, we have not only sports projects. The most place in Russia, when the whole world was cheering for their important day for the fund is March 21, when World Down national team, when millions of fans watched the broadcasts Syndrome Day is celebrated. By this date next year, we are on TV without stopping, and hundreds of lucky ones - in the aiming to do something really exciting in order to attract the stands of Russian cities, saw our biggest and brightest attention of society to the problem of adaptation and achievement - #CHARITYFOOTBALL. This is a really ambitious socialization of people with learning disabilities. This year, we project, which includes two subprojects. The first is a charity held an action #WEAREALLSPECIAL. The video, which shows photo exhibition of the same name, which takes place at two how each person is special, focusing on the can do not the Feedback venues - at Sheremetyevo International Airport and at cannot do was shown on many TV channels. It seems to me Chistoprudniy Boulevard. It looks very impressive, people are that such things unite people around the fund and then they “... We express our deep appreciation to "Downside Up" and "Syndrome of Love" for such a bold undertaking that walking, watching. I am sure, the continuation follows. The start to support us. It is joyful, when the TV channels and opened another door to the world for children with Down second one is fanatical "chants", which teenagers with Down media platforms go to the meeting, they help, support and do Syndrome!” syndrome say together with famous football players. And not take a penny for it”. Elina Maltseva, head of “Kind Hearts”, non-governmental what's the most fantastic - the director of the video - Fyodor organization for support to people with Down syndrome and Bondarchuk". The complete interview of Irina Menshenina is available on their families, city of Ryazan www.синдромлюбви.рф within the News section».

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Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 During the year, the ongoing reorganization of the activities of "Downside Up" Fund in connection with the opening "DOWNSIDE UP" AND "SYNDROME OF LOVE" of "Syndrome of Love" Fund continued. We believe that showing the financial results of the two funds together is the FUNDS OUTREACH AND AWARENESS RAISING best way of recording results during this reporting period During the reporting period: And also: 1 828 7 13 850 111 260 239 108 222 057 rubles were raised in the materials regarding the work of "Downside Up" Fund, advertising banners in followers on Facebook. rubles were spent during the reporting period (including «Syndrome of Love» Fund and «CHARITY SPORTS» printed and online media (+ 159% compared to the reporting period (including pro pro bono services and bono services and goods) project have been published in the media. Among them: (Trud, Vedomosti, Р-Sport, previous year). goods). RIA Novosti, etc.); 155 49 15 405 followers on VKontakte reports and social videos by federal and regional TV- outdoor advertising in (+ 208% compared to the channels (First Channel, Russia-1, TVTs, OTR, NTV, Moscow and St. previous year). REN-TV, Dozhd, Match TV and other); Petersburg for social ads of «Downside Up» and «Syndrome of Love» 11 460 SOURCES OF FUND STRUCTURE OF EXPENSES 1 668 Funds; followers on Instagram 16 727 036 rubles publications in printed and online media (RIA Novosti, (+ 180% compared to the Fundraising, 15% 33 625 575 rubles TASS, ASI, Project +1, Forbes, Kommersant, Argumenty I previous year). Support of families raising children with Facty, Snob, Philanthrop, Miloserdiye, 7ya.ru, Takiye 15 181 624 rubles 2 38 304 966 rubles Down syndrome, 31% Corporate donations, Public and Media dela, Woman.ru, Cosmo.ru, Pravoslaviye I Mir, 44 418 000 rubles outreach and 34% Championat. com, Soviet Sport, newspaper “My Region” charity photo exhibitions Subsides awareness raising, > 10 000 and grants, 40% 14% and other). #CHARITYFOOTBALL at Sheremetyevo Tens of thousands of International Airportand messages in public 10 541 915 rubles Administrative at Chistoprudniy forums and in the expenses, 10% 19 206 016 rubles Boulevard. leading social 2 936 983 rubles Education activities, 18% networks. 6 266 812 rubles 22 270 461 rubles Special projects, 3% Entrepreneurial Individual donation, activities, 6% 20%20% 1 123 378 rubles Analytical activities, 1% 6 505 881 rubles Entrepreneurial 29.05.2018 2 373 649 rubles expenses, 6% Publishing, 2% Football: everybody plays Entrepreneurial expenses include the costs of printing “…on the eve of the FIFA 2018 World Cup in Russia, a photo exhibition # CHARITYFOOTBALL was organized. The “Let's Start to Talk” methodological sets and purchasing exhibition was open on the second floor of Terminal D of Sheremetyevo International Airport on International "Numicon" methodological sets. Children's Day on June 1 and lasted until July 31”.

The amount of funds received exceeded the amount of funds spent by 3,038,182 rubles due to the fact that in the reporting period funding was received for projects that will be implemented in 2018-2019. 21.03.2018 Tutta Larsen, Valdis Pelsh, Sogdiana and other celebrities support social campaign ##WeAreAllSpecial "Today, on March 21, World Down Syndrome Day is celebrated all over the world. In honor of this day, the Charity Fund "Syndrome of Love" in conjunction with the creative agency Red Keds launched a federal social campaign #WeAreAllSpecial. The purpose of the action is to inform millions of Russians that each of us has its strengths and weaknesses - and that we, like people with Down syndrome, are not able to do everything, but achieve success in different ways.

18 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 19 Novosibirsk region •Remedial Pedagogy Centre, city of •Cookie craft •“Veles Capital” WE THANK OUR PARTNERS AND DONORS Krasnoyarsk •Courtyard Moscow Paveletskaya •“Infomir Tout” •NSPU (Novosibirsk State •NGO "So-deystviye", Ufa •Hotel •“Kanebo Cosmetics Rus” We express our sincere and heartfelt gratitude to our corporate and private donors and partners. Pedagogical University) •ROOO "Luchiki dobra", Rostov-on- •Decathlon Russia •“Cartake” •Regional Resource Centre NSPU Don •DRC Group •“LLC CLARINS” "Family and children" •“Dorogoyu Dobra” – association of •ExxonMobil Russia Inc •“COMPETENTUM.RU” Federal and local •Research Centre of evidence- •Central Botanical Garden of •"Solnechnie notki" orchestra parents of disabled children, city of •FITMOST •“Konica Minolta Business based social engineering of Moscow (Sunny Notes) Kirov •FrieslandCampina Росс Solutions Russia” government, scientific, MGPPU •State Geological Museum •“Big Fish” of portal sostav.ru Other Russian regions •“Kind Hearts”, non-governmental •Hogan Lovells (CIS) •“Consolidator” educational and charitable •Russian State Social University •The State Darwin Museum •“MarSpo Awards” organization for support to people •I Love Running •“Courtyard Marriott Moscow New •“Golden Cat” organizations (RSSU) •The Pushkin State Museum of •Play and Help – charity initiative with Down syndrome and their •iSpring Solutions Arbat” •Saudi Arabia School in Moscow Fine Arts (Moscow) •Best Experience Marketing of sportsman’s families, St. families, city of Ryazan •KDL •“Metro Cash & Carry” •Federal State Funded Research •The State Historical, Awards Petersburg •“Little Suns of Samara”, •L’Oreal •“Mondelez Rus” •Federation Council's Committee Institution «Institute of Architectural, Art and Landscape •“CSKA” Football Club •Remedial Pedagogy Centre, city of organization for the support of •Luhta Fashon Group LLC •“MONAX TRADING” on Social Policy Correctional Pedagogy of the Museum-Reserve “Tsaritsyno” •Regional non-governmental Pskov disabled people with Down •Mail.ru Group •“Nestle Russia” •Ministry of Education and Russian Academy of Education" •Children's and young person’s charity organization “Remedial •Oceanman Sochi — International syndrome and their families, city of •Mars •“PepsiCo Holdings” Science of the Russian •School №1285 of Moscow sports school "Avangard", Pedagogy Centre” Championship of open-water Samara •MATTEL FOUNDATION •“Perfetto Kontabile” Federation •Charitable Fund "Vklad v Mytischi, Moscow Region, Director •Charitable Fund “Kachestvo swimming •COO "Syndrom dobra", Simferopol •Meet For Charity •“Pfizer” •Ministry of Economic buduschee" A.V. Ryabov - Master of Sports in Zhizni” (Quality of Life) •Organization for social support of •“Sunny Children”, Sverdlovsk •Microsoft Philanthropies •“RozTeh” Development of the Russian •Charitable Fund "Galchonok" Russia •Regional non-governmental children with special needs “Deti regional NGO, chairman – T. •NO ONE •“Sela Retail” Federation •Charitable Fund "Phoenix" •Children’s school of arts named organization “Vremya Peremen” Solntsa” (Children of the Sun), Chekasova •Palais Royal •Pick Point •Ministry of Defence of the •"Kluch" Charitable Foundation after N.G. Rubinstein •Regional non-governmental Blagoveshensk •“Solnyshko v ladoshke”, •Secret Souce •“Syngenta” Russian Federation •Charity Foundation "Podari •Children's Musical Theatre organization of disabled people •“Solntse v Rukakh”, Belgorod association of parents of children •Shakti Terrace •“Sodexo” •Emergency Ministry of the Zhizn" (Gift of Life) "Domisolka " “Perspektiva” •“Special centre for children’s and teenagers with Down •Shell •“Societe Generale Life Insurance” Russian Federation •Charitable Fund “Russkaya •Children's Edutainment Park •Russian Football Union development “Harmony”, Bryansk syndrome, Tomsk •Svarog Capital Advisors •“Splat” •Secretariat of A.V. Dvorkovich Bereza” (Russian Birch) "Kidzania" •Maintenance and operations •NGO "Tochka opory", project •Public Organization “Chuzhikh •The Walt Disney Company CIS •“TRIEXTRA” •National Foundation for the •Charitable Fund “Zhizn •Children's Hospice "Dom s area №21 in North-East «Solnechny gorod", Togliatti detei ne bivayet”, Khabarovsk •LLC •“USP Compulink” Support of Children at Risk Prodolzhaetsya” (Life goes on) Mayakom" (House with the Administrative District of Moscow •“St. Petersburg Early Intervention •Hokkey club “Lada”, Toliatti •UBS •“Fisher” •Committee on development of •Charity Foundation "Izmeni lighthouse) •“Special Olympics of Russia” Institute”, private institution of •Remedial Pedagogy Centre, city of •Visa •“AdCharge” non-profit sector and support of Zhizn" (Change One Life) •Children model agency "Flowers •Sport School for Adults I LOVE further vocational education Pskov •WESTERN UNION •“Airbus Helicopters Vostok” socially NGOs of Public Chamber •Charity Fund of Elena and of Montmartre” SUPERSPORT •NGO "Solnechny krug", Barnaul •“I can!", Cherepovets •Wood Mackenzie •“HSBC Bank” ( RR ) of the Russian Federation Gennadiy Timchenko •Gogol House - Memorial Museum •"Dancing House" Studio •Charitable Fund “Vladmama”, •Caritas Social School” – private •Kaspersky Lab •“Expographica” •Food Production Facility •CAF (Charities Aid Foundation) •Tennis project Anastasiya •“Open Art” theatre Vladivostok. institution of further vocational •OTP Bank •“Ernst and Young” “Kremlevskiy” •Deaf-blind Support Fund So- Myskina •Official Fan Club “Spartac •Charitable Fund “BlagoDari”, education •Fortuna •“Unilever Rus” •Department of Labor and Social edinenie (Connection) •Izmailovsky recreation park and Moscow” Baikonur •Non-governmental organization, •V.I.P. Service •Egon Zehnder Protection of the population of •Naked Heart Foundation forest park 'Izmailovo' •CSKA •“Vikhod”, Belgorod for support to disabled people, city •KB Delta Credit •“Megafon” Moscow •SPARTAK football team •Federal State Unitary Enterprise •“Vykhod”, St. Petersburg of Yaroslavl "Licom k miru" (Facing •KPMG •“Rosneft” •Public Health Department of the supporters – “Spartakovtsy” "The Great Moscow State Circus •Association of children with the World), Yaroslavl •Marsh - Insurance brokers •PJSC “Rosbank” Moscow Government •Inclusive social project on art for on Vernadsky Avenue" special needs “Svet”, Vladimir. •Orica CIS •“Sdelai” •Education Department of the Organizations – friends children and young people with •Russian Hockey Federation •“Vygotsky Society of Support to •UniCredit Bank •Representation of a simplified Moscow Government disabilities, their families and •"Lutshie druzya" Fund Children” – non-governmental Foreign partners •Medsi joint-stock company •Moscow’s Department of Culture and partners across friends, "Koleso Obozreniya", •Public health and social charity, city of Volgograd •“Intesa” Bank "Airbus" (France) •Department of Physical project manager N. Cherkasova development fund “Focus Media” •Association of public •VTB24 Bank (Public Joint Stock •Public Joint Stock Company Moscow •Absolute Support (London) Ltd Education and Sport of the •Integrated Theatre Studio "Krug •Football Club “Zenit St. organizations of parents of Company) "Rostelecom" of long-distance and •Charles Borden I", artistic director Natalia Popova Petersburg” children with learning disabilities, •Baker & McKenzie - CIS, Limited international telecommunications Moscow Government •Community Options, Inc., USA •AUTISM awareness in Russia •Integrated Theatre Company •Football Club “Locomotiv” St. Petersburg •Charitable Fund to support services •Department for Transport and •Down Syndrome International •IRON STAR "Krug II", artistic director Andrey •Football Club “Rodina” •Regional children's psychiatric humanitarian program and social Advertising agency “Laisa” Transportation Infrastructure •Downside Up Limited, Great Britain •MAZDA CLUB RUSSIAN MAZDA Afonin •Football Club “Spartak Moscow” hospital in Vladivostok initiatives "Deloitte” •Restaurant ‘Uzhane” Development of Moscow •DSActive, Great Britain COMMUNITY •“Inter” football team of •Center for Social Rehabilitation •Down Syndrome Society – •Vedomosti. Conference •Beauty salon “Portfolio” •Department of Regional •DSEI — Down Syndrome Education •New Philanthropy Capital Children’s and Youth Sports “Turmalin” municipal NGO of disabled people, •Nexia Pachioli •Sberbank “Vmeste” Security and Anti-Corruption International •RUNNING HEROES RUSSIA School №75 •Nikulin Circus “Show of Vladimir city of Novosibirsk •GK Spectrum •“Shokoladnitsa” Activities of Moscow •European Down Syndrome •SPACE Marathon •Interactive children’s’ city of Deryabkin” •Center of psychological, medical •CS Medika (OMRON) •“Infinitum” •Department of Physical Association •SWIM CUP professions "KidBurg" •Swimming School of Eugeniya and pedagogical support of •Clever Publisher •Students team “Pobeda” of Education and Sport of the •FIFA •TYR •International festival Bezruchenko “My Swim” Volgograd •“Deloitte & Touche CIS” Voronezh State Technical University Moscow Government •ISEI — International Society on •Angels of Plushenko Academy of “Intermuseum” •Exclusive distributor of NUTREND •Center of Education of Magadan •“Belaya Dacha Trading” •“Biblio Globus” •Ministry of Sport, Tourism and Early Intervention figure skating Angels of •Fitness club “Mark Avrelius” in Russia – “Strategiya” (Strategy) №1 •“KIWI” •Transport Company “Pec” Youth Policy of Russia and the •Massachusetts Down Syndrome Plushenko •“Fox Kids” •“Zhizn bee slyez” (Life Without •Ives Rosher Russia •“TCC” Moscow Government (Moscow Congress, USA •Center of Psychological and •Korsa Media” Tears), non-governmental •“Alpinabook” •“Izmailovo” Gamma and Delta Sport Committee). •Middlesex University, Great Britain Pedagogical support of family •Social advertising “Future of organization of support to people •ING BANK (EURASIA) •Manicure & Pedicure Network •Public Relations Committee of Partner organizations in •Reason Digital “Nelishniye deti” Advertising” with disabilities, city of •INTRAROS CO., LTD “Palchiki” the Moscow Government the Russian regions •TILL, USA •Centre for Support and •Martha and Mary Convent of Makhachkala •Italian Cafe “Mercato” •Fitness Club “Olympic Star” •Yevgeny Bunimovich, Children’s •Gert de Graaf, PhD., Stichting Socialization of children and Mercy, Orthodox Elizabeth •“Raduga”, Centre for development •«Art Pictures Studio» •Aleksandr Legkov Equipment Rights Commissioner for Moscow Downsyndroom, Нидерланды teenagers with special orphanage Sverdlovsk region of children with disabilities •«Mozga» Centre •State Unitary Enterprise •Down Syndrome Guild of Greater developmental needs “Svitok” •Sheremetyevo International •NGO "Zvezdochki na zemle", •“Chinese Pilot Jao Da” Club •“AndyV” Logistical company “Mosgortrans” Kansas City, executive Principal •Rosoboroneksport. Airport •“Family to Children”, Kaliningrad •“DLA PIPER RUS LIMITED” •UTV Holding •MVD Main Directorate for the Amy Allison, Kansas, USA •JSC "Planetarium" •"New Names” interregional non- Yekaterinburg •“Sila Dobra”, Simferopol •DANONE Protection of Public Order in •Christel Manske, Doctor of •Association of Parents of governmental charity foundation •Resource Center “Talisman”, •NGO "Solnce v nashikh serdsakh", •MARS Moscow Philosophy, Founder and Director of Disabled Children of Moscow •Volunteers’ club Yekaterinburg Krasnoyarsk •“Chevron Neftegaz Inc.” •Prefect’s office of the North- the Institute for the Development Region •Moskvarium •Social Policy Committee of the •"SOLNECHNY MIR", Lipetsk •Red Keds Eastern Moscow District of Functional Brain Systems, •Charitable Foundation •“Expromt” children’s musical Legislative Assembly of Sverdlovsk •NOOO "Innovation Centre in the •Cheeze shop “Skazhite siiir” (Say •MVD of the North-Eastern Hamburg, Germany “Volunteers to Help Orphans” theatre, region, chairman – V. Pogudin XXI century with 21 chromosome Cheeze) Moscow District •Michael Guralnick, PhD, Director of •Charitable Foundation •Moscow Zoo •“Protection of Mother and Child’s "Siyaniye", Nizhny Novgorod •“Megalicense International” •GDKB №13 the Centre on Human Development "Sozidanie" •Moscow International Education Health” – counselling and •“Veras”, organization for the together with Entertainment One •State Autonomous Institution of and Disability (CHDD) at the •Charitable Foundation “Happy” Salon diagnostic centre, city of support of children and young UK the city of Moscow «Scientific- University of Washington (Seattle, •Charitable Foundation •Nikulin Moscow Circus on Yekaterinburg, headed by E. B. people, city of Nizhny Novgorod •International Finance Corporation. Practical Center of Medical and Washington), Chairman of the “Zhiznenniy Put” Tsvetnoy Boulevard Nikolayeva •“Down Center”, St. Petersburg THE WORLD BANK GROUP Social Rehabilitation International Society on Early •Charitable Foundation “Vikhod” •"Big Brothers Big Sisters" of •Ministry of Social Policy of •“Planeta druzei”, Omsk •“Institute of Information Society •Research Centre of Medical Intervention, USA •Charity Centre of socio- Russia Sverdlovsk region •Department of prevention of early Development” Genetics (RCMG) of the Russian •Sarah Philps, Director of ARC, UK pedagogical rehabilitation •Interactive Science Museum •“Sunny Children”, Sverdlovsk social orphanhood of Ministry of • “Data line” Academy of Medical Sciences "Rafail" “Experimentarium” regional NGO, chairman – T. Social Care of Amur Region •“Avrora RusCo” (RAMS) •Blagosfera •Museum of Contemporary Art Cherkasova •PGOORDI “Teplo serdets”, Companies that supported •“Activ-IT” •State budgetary professional • Center “Resurs” (resource), •SERPANTIN "Garage" Pyatigorsk us •“ALD Avtomotiv” educational establishment of the •Russian Federation of Sports for •Scientific laboratories of the Yekaterunburg. •PGOORDI “Teplo serdets”, •“Alinga Consulting Group” city of Moscow "Technological Persons with Intellectual Polytechnic Museum Mineralniye void •AMWAY college № 21" Disabilities •National Association of Charities Kaluga region •EEI "Rassvet", Pskov •Alenchna и EcoBox •“A-farm” •College of Tourism and Hotel •SBD of Culture of the city of "NABO" •“Solnechny Luch”, non- •Bain •“Burger Rus” Management №23 Moscow "Moscow State Academic •Center of adaptation and •Administration of Kaluga region governmental organization for •Biletix •“Veles Trust” •Moscow State Pedagogical Theater of Operetta" development for teenagers and •State Traffic Safety Inspectorate support to people with Down •Boeing in Russia •“Vertical” University (MGPU) •Moscow Puppet Theatre adults with learning disabilities of MVD of Russia, Kaluga region syndrome, city of Tiumen •CimpleO •“Voerman International Moscow” •Moscow Municipal University of •State Autonomous Institution of “Izymrudniy Gorod” (Emerald City) •OMVD of Borovsk region •RPM "Solnechny mir", Izhevsk •Clifford Chance CIS Ltd •“Dell" Psychology and Education Culture of the city of Moscow "ZIL •“Our sunny world” •State Traffic Safety Inspectorate •“Solnechnaya strana”, Tuapse •Competentum •“Johnson & Johnson” (MGPPU) Cultural Centre" •“Azalea Décor” of UMVD of Russia, Borovsk Region

20 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 21

Annual Report Downside Up Charitable Fund, 2017-2018 Information Partners •Inva.tv website for disabled •Sergey and Darina Plotnikovy •Aleksander Marov •Te-st.ru social technologies •Sergey Ignashevich •Dima Golub •Aleksander Makhov platform •Sergey Ovchinnikov •Gleb Dyachenko •Aleksandra Babkina •VKontakte Social network •Mosblago.ru single information •Sergey Svetlakov •Efim Glezerov •Aleksandra Bugrova •First channel database of Moscow charity •Sergey Shilov •Ivan Gavrushkin •Alexey Lozhenko •Russia-1 TV channel •DISLIFE.RU •Sordiana •Ivan Goryachev •Alexey Smirnov •NTV TV channel •“DobroMail.ru” •Stanislav Dyachenko •Ivan Nastasov •Alina Kulikova •TVC TV channel •“Finparty.ru” •Stas Starovoytov •Ivan Nesterov •Andrey Gudalov •OTP TV channel •“Woman.ru” •Tatiana Plotnikova •Ivan Novikov •Andrey Kavun •Match TV channel •PICCOLO •Tina Kuznetsova •Katya Vedeneeva •Andrey Yavishev •TNT and TNT4 TV channels •Fox.Time.ru •Tina Kandelaki •Kolya Zuzin •Anton Stremenovskiy •STS and STS Love TV channels •Fyodor Bondarchuk •Kolya Ivanov •Arseniy Chernov •5 TV channel •Khamil (Kasta) •Luba Shalonskaya •Varvara Pavlenko •REN TV Sports, movie, stage, •Edgar Zapashniy •Maksim Mustafin •Vika Chemarina •SPAS TV channel television and radio •Yulia Snegir •Marina Mashtakova •Viktor Kalinin •Dozhd TV channel celebrities •Yuriy Zhirkov •Masha Papadze •Galina Kagarlitskaya •Domashny TV channel •Misha Goryachev •Dariya Bashvinova •Russia Today TV channel •Misha Zaborskiy •Diana Samsonenko •TLC TV channel •Askold Zapashniy, Trustee of Downside Up pupils’ •Misha Stroyev •Dmitriy Kazakov •ID Investigation Discovery TV “Syndrome of Love” parents •Nika Kirillova •Yevgeniy Kurgunyan channel •Dmitriy Dibrov, Trustee of •Olesya Evseyeva •Yevgeniy Shtein •Animal Planet “Syndrome of Love” •Pavel Pavlenko •Yevgenia Popova •Discovery Channel •Tutta Larsen, Trustee of •Anna and Sergey Kravchenko •Pavel Rusakov •Yekaterina Manayenko •“Che” TV channel “Syndrome of Love” •Alexey Vasyanin •Rimma Ismailova •Yekaterina Chernikh •“TV3” •Evelina Bledans, Trustee of •Aleksander Glezerov •Saha Ivanova •Elena Potapova •“Pyatnitsa” TV channel “Syndrome of Love” •Aleksander Syomin •Svetlana Kislyakova •Elena Bogdanova •“Super” TV channel •AMARIA •Andrey Guz •Semen Syomin •Ivan Kurinnoy •“2*2” TV channel •Alan Gatagov •Ariadna Cherkasova •Stas Bogdanov •Irina Averina •“Moscow 24” and “Moscow. •Alan Dzagoyev •Viktoriya Goryacheva •Stas Milyavskiy •Irina Sokovnina Doveriye” TV channels •Aleksander Anatolievich •Denis and Valeriya Bulgakovy •Stas Morzhetskiy •Irina Shubina •MIA "Rossya segodnya": the •Aleksander Golovin •Egor Kolchanov •Stepan Golovkin •Kirill Popov agency of sports news "R-Sport", •Aleksander Yerokhin •Yevgeniy Pryakhin •Stepan Kalachev •Kirill Tikhonov the Russian News and •Aleksander Legkov •Yekaterina and Makksim •Fyodor Bogdanov •Lusia Rodrigez Information Agency "RIA Novosti", •Aleksander Kerzhakov Govkiny •Feofan Chistovskiy •Ludmila Sorokina Radio "Sputnik" •Aleksander Samedov •Elena and Vitaliy Lunshiny •Feodora Panteyeva •Maksim Knyazev •Rambler and Co: “Rambler”, •Alexey Letniy •Elena Melkozerova •Yasha Lunshin •Marina Panina “Afisha”, “Gazeta.ru”, •Alexey and Vasiliy Berezutskiye •Elena Nesterova •Maria Shalneva “Championat.com”, “WMJ.ru”, •Anastasiya Myskina •Elena and Eduard Rusakovy Athletes for Good •Milana Verkhunova “Passion.ru”, “Letidor.ru” •Andrey Lunev •Ilya and Oksana Ivanovy •Mikhail and Svetlana •TASS Russian Information •Andrey Rodnoy •Ivan Krivorotenko Rovkovskiye •Vera Markarova Telegraph Agency •Andrey Khamil •Irina Panteeva •Nadezhda Grobova •Vitaliy Kichatov •Interfax •Anna Ardova •Irina Tikhomirova •Nail Garifullin •Vladimir Kozhayev •Vesti. Medicina VGTRK Internet •Anna Semenovich •Lubov Zyuzina •Nikita Kopylov •Gulnara Akhmetova project •Anton Bogdanov •Ludmila and Igor Kolchevy •Nikolo Bravetta •Denis Pershin •ASI Agency for Social •Anton Boglevskiy •Liliya Pavlenko •Oleg Aksyonov •Yevgeniy Bezruchenko Information •Artem Rebrov •Maya Shishkova •Oleg Babenko •Yevgeniy Drozdovskiy •Kommersant newspaper •Valdis Pelsh •Natalia Goryacheva •Oleg Slapinskiy •Yevgeniy Gribov •Argumenty and Facty weekly •Vasiliy Timchenko •Natalia Zaborskaya •Olga Dzhumanchuk •Yekaterina Afonasova newspaper •Viktor Gusev •Natalia Sokolovskaya •Olga yegupova •Zhenya Kochnev •Sovetsky Sport newspaper and •Viktor Nabutov •Natalia and Vladimir Stroyevy •Olga Zheltikova •Ilya Galkin website SOVSPORT.RU •Viktor Onopko •Nina Morzhetskaya •Olga Morozova •Marina Shmits-Gordeeyava •Izvestia newspaper •Viktor Goncharenko •Oksana Dorokhova •Olga Pavlenko •Mariana gevorkyan •Trud newspaper and Trud.ru •Viktoriya Galustyn •Olga Makarova •Petr Zozulya •Maria Byakina website •Vladimir Deryabkin and his •Olga Repina •Svetlana Tomashevskaya •Masha Voyelkina •Vedomosti show •Pavel Shustrov •Sergey Gvozdev •Mikhail Dolgikh •Forbes magazine and Forbes.ru •Vladimir Nikolayevich Vdovin •Svetlana Gavrushkina •Sergey Zhedunov •Nikolay Sannikov website •Vladimir Stogniyenko •Svetlana Nagayeva •Tatiana Voyevodskaya •Olesya Kirillenko •Radio 1 radio station •Vladislav Kanopka •Svetlana Kolomiyets •Tatiana Panasuk •Olga Vorontsova •Vera radio station •Vladislav Opelyants •Svetlana Samsonova •Yuri Levinon •Europa Plus radio station •Vyacheslav Manucharov •Sergey and Elena Titovy •Polina Yermoshina •Dushevnaya Moskva NGO •Daler Kuzyayev •Sergey Zherdev •Sasha Sadovnikova Resource Centre of Public •Dzhamaldin Khodginiyazov •Tatiana Olshanskaya •Svetlana Kirsanova Relations Committee of Moscow •Denis Glushakov •Tatiana Kharakhailova •Svetlana Tomashevskaya •7ya.ru website •Dima Bilan •Rinat Khairulin •Sergey Nosov •Philanthrop online periodical •Dmitriy Ananko •Ruslan Khalikov •Stepan Vakhmin •Domashni Ochag magazine •Dmitriy Bulykin •Yuriy Kim •Tatiana Polskaya •Cosmopolitan magazine •Dmitriy Sennikov •Yuriy and Tatiana Podobedovy •Yana Bardinskaya •Pravoslaviye i Mir web portal •Dominiko Krishito •Meduza.io web portal •Eva Korsakova •Mail.ru •Yevgeniy Aldonin Young adults with Aa well as: •Wonderzine.com online •Yevgeniy Plushenko Down syndrome who periodical •Elena Borsheva •Sostav.ru •Ivan Urgant have supported our •Dmitriy Sergeyev, Chairperson •Snob •Igor Akinfeev projects of the Board of Trustees of •Moskovskaya blagotvoritelnost •Igor and Yekaterina Smolnikovy “Syndrome of Love” portal •Lena Letuchaya •Alexey Gnedovskiy, Trustee of •Alexey Degtyarev •Takie dela portal •Lubov Tolkalina “Syndrome of Love” •Alexey Semenov •Miloserdie.ru Orthodox charity •Malena Mayakovskaya •Oleg Tsarkov, Trustee of •Alexey Shishkov portal •Marat Gali “Syndrome of Love” •Alisa Melnikova •I vse za odnogo project •Maria Pogrebnyak •Yulia Yevdokimova, Trustee of •Angelina Makarova •Communication Project +1 •Mario Fernande “Syndrome of Love” •Anastasiya Petrova •Tak prosto! good deeds project •Nastya Makarevich •Kirill Gromov, Chairperson of •Andrey Repin •Marafonec running magazine •Natalia Lesnikovskaya “Syndrome of Love” Board •Anton Sankevich •The-Challenger.ru online •Oleg Kornaukhov •Polina Nemirovchenko, member •Artem Kravchenko periodical •Olga Guryakova of “Syndrome of Love” Board •Artem Silin •Begaem.com portal •Olga Shelest •Yevgenia Maltseva, expert of •Vadim Kolchev •Obraz Zhizni. Moskva online •Polina Dibrova “Syndrome of Love” •Vasiliy Bulgakov periodical •Rodion Gazmanov, •Igor Namakonov, expert of •Varvara Verkhova •All-Russian Society of Disabled •Roman Shirokov “Syndrome of Love” •Vladislav Sitdikov People •Svetlana Bondarchuk •Aleksander Lapshin •Daria Mukhanova

22 Annual Report Downside Up Charitable Fund, 2017-2018 Annual Report Downside Up Charitable Fund, 2017-2018 23 FUND MANAGEMENT TABLE OF CONTENT Стр. President of the Fund: Marlen Manasov, a former member of UBS Investment Bank Board of Directors, currently an entrepreneur. Overview of the year’s results ______1 Bright events of the year ______2

The founder of the Fund: Jeremy Barnes is a British citizen who worked in the investment sector in Moscow Support to families raising children with Down syndrome ______4 between 1993 and 1998. He is the father of three children and uncle of Florence Garrett, a young girl with Down syndrome. Florence’s birth in 1993 was the motivation for Jeremy to establish a charitable fund for Russian children Educational activities ______11 with Down. Publishing activities ______13 Board of Trustees: Analytical work ______14 • Bogdanova Mariya, managing partner of JSC "Realeks"; Systematic Approach for DSU activities ______14 • Voloshin Aleksandr, chairman of the Board of Directors of JSC "Freight One"; • Gerasev Aleksey, rector of Novosibirsk State Pedagogical University, Doctor of Biological Sciences, Honorary Worker Special Projects: of Higher Education of the Russian Federation (2006); ��______15 • Ginter Evgeniy, academician of Russian Academy of Medical Sciences, Professor, Head of the RAMS Research Centre Development of NGOs in regions ______15 of Medical Genetics; • Gnedovskiy Aleksey, General Director of «IK Veles Capital»; CHARITY SPORTS in the regions ______16 • Razenkova Yuliya, Ph.D., Head Of Laboratory for Care, Early Diagnosis and Special Assistance Methods for Children CHARITY SPORTS Kids ______16 with Special Needs, Institute of Correctional Padagogy of the Russian Academy of Education Inclusive Volunteering ______16 "Syndrome of Love" Activities ______17 Awareness raising of "Downside Up" and "Syndrome of Love" Funds and Activities with Mass Media ______18

Operations management is lead the by Fund director and directors of the main areas of work: Sources of funds. Structure of expenses ______19 • Portugalova Anna – Director of Downside Up Fund; We thank our partners and donors ______20 • Nechaeva Tatyana – Director of Family Support Centre; Fund management. Fund accountability ______24 • Pole Elena – Director of Educational Centre;

• Menshenina Irina – Director of Development Department;

• Borovykh Aleksandr - Director of Strategy Department.

FUND ACCOUNTABILITY

• In accordance with Russian legislation, "Downside Up" Charitable Fund provides regular reports to the tax authorities, off budget Funds, the state statistics bodies, the Ministry of Justice; conducts an annual statutory audit of annual accounting (financial) statements of the Fund.

• Every year the Fund prepares its annual reports and and posts them on its website.

Feedback “You are our guiding star. You helped us a lot: there is a lot “It seems to me that 20 years is neither too few nor too Downside Up Annual Report 2015-2016 became of information, inspiring articles and books, methodological many years.. The Fund is so young, and yet also so mature”. the silver medalist of the All-Russian competition support of specialists - all this is very valuable for raising our Elena Nikolayeva, head of “Protection of Mother and of annual reports of the NGO "Point of Reference". spirit”. Child’s Health” – counselling and diagnostic center, city of Artem's mother (10 years old) Yekaterinburg.

24 Annual Report Downside Up Charitable Fund, 2017-2018

Annual Report Downside Up Charitable Fund, 2017-2018 HOW YOU CAN HELP US

Make a donation: • Using a bank card: via the www.downsideup.org • Using a payment form: at any bank • By sending an SMS to number 3443 with letter "СД" and the amount • In cash: via QIWI terminals • By making a donation contract

Payment details for the remittance of your donation: Charitable Fund "Downside Up" non-profit organization Current account 40703810038040100912 with "Moscow Bank of Sberbank of Russia, OJSC, Moscow Correspondent account 30101810400000000225, BIK 044525225 with OJSC "Sberbank of Russia", Moscow KPP771901001 Taxpayer's Identification Number 7705159882 Payment purpose: "Charity donation (in support of the Fund's statutory objectives)"

For more details please refer to www.downsideup.org

Downside Up Charitable Fund 105043, Moscow, 3rd Parkovaya, 14 A Tel .: (499) 367-1000 Fax: (499) 367-2636 [email protected] www.downsideup.org