DOWNSIDE UP CHARITABLE FUND Annual Report July 2015 – June 2016 1997 – 2016 Dear reader, You will have noticed that this annual re- Moscow Department of Education. In ad- port is three times thinner than the previ- dition to the practical work with families ous one. It doesn’t mean that we have re- and specialists, we have also conducted duced our activities! On the contrary, we awareness-raising campaigns, which have have more projects and plans than before, been especially significant during the re- but we have just learned how to talk about porting period. Special children and their them briefly. parents have become the main heroes of This year we paid close attention to the these campaigns. analysis of the Fund’s activities. We inter- We continue to demonstrate through viewed families about services they have our work, that possibilities for children access to. Based on the surveys and evalu- with Down syndrome are increasing. ations performed we have now fine-tuned What is important is not to stop at what some of our programmes. has been achieved but to continue to aim Requests from families convinced us that high and be ambitious. Next year our it is time now to start working with our grad- Fund is celebrating its 20th anniversary uates. Those children, who received support and we are sure that we will continue to in their early years, are now returning to us move forward, keep growing and keep as pupils. We now provide psychological changing. We are full of ideas and we are and employment support and guidance to looking for new ways of bringing these them as well as trying to create new oppor- ideas to fruition. tunities for self-fulfillment. We would like to thank everybody who This year Downside Up received a li- helps those families raising children with cense for educational activities from the Down syndrome improve their quality of life! Truly yours, Anna Portugalova Director TABLE OF CONTENTS OVERVIEW OF THE YEAR’S 2 RESULTS BRIGHT EVENTS OF THE YEAR 4 SUPPORT TO FAMILIES RAISING CHILDREN WITH DOWN 8 SYNDROME EDUCATIONAL ACTIVITIES 12 TRAINING FOR REGIONAL NGOs 12 ONLINE INFORMATION 14 RESOURCES PUBLISHING ACTIVITIES 15 ANALYTICAL WORK 16 OUTREACH AND AWARENESS 17 RAISING FUNDRAISING AND CHARITY 18 SPORTS SOURCES OF FUNDS 20 STRUCTURE OF EXPENSES 20 WE THANK OUR PARTNERS 21 AND DONORS Downside Up Annual Report, 2015–2016 1 OVERVIEW OF THE +11% +29% YEAR’S 5,457 2,715 families of face-to-face RESULTS children with and distance Down syndrome consultations were registered in the conducted for Fund’s programmes children and their families 15,850 14,058 copies - the total copies of books and circulation of journals published books and journals by the Fund were published by the sent to families Fund 2,002 +51% 349 +20% 152 +46% professionals, publications on companies parents and NGO Down syndrome and supported the Fund members were the Fund’s activities with donations, free trained appeared in the goods and services mass media * compared to the previous year 2 Downside Up Annual Report, 2015–2016 +31% 412 619 group lessons were families were given held for children consultations and their families through the Fund’s online forum 2,692 68 copies of books training events and journals were held for published by the professionals, Fund were sent to parents and NGO professionals members 3,880 81,104,604 72,436,273 private individuals rubles – the total rubles – the total made donations, amount of funds amount spent during including 305 raised during the the reporting period individuals making reporting period regular donations +33% +42% +11% Downside Up Annual Report, 2015–2016 3 BRIGHT EVENTS OF THE YEAR September 2015 October 2015 Galina Odinokova, specialist Downside Up obtained in Family Support Center of state license for educa- Downside Up defends her tional activities from Mos- thesis “Identifi cation and cow Department of Educa- prevention of problems in tion. 30 attendees of train- communication between ing course received offi cial mother and a baby with certifi cates of enhanced Down syndrome“. The re- qualifi cations on May 26, sults of this innovative work 2016. will form the basis for new seminars for specialists and Summer 2015 parents. and spring 2016 Teenagers with Down syn- drome visited the summer camp together with typ- ically developing peers. These inclusive sessions have been made possible thanks to the active cooper- ation of “Mosgortrud” and Charitable Fund “Downside Up” who prepared the spe- cial training for youth lead- ers and programme for in- clusive sessions. March 2016 Downside Up organized the special event “Love Syndrome” dedicated to World Down Syndrome Day that was held at the Central House of Actor. This event was attended by more than 500 guests. 4 Downside Up Annual Report, 2015–2016 March 2016 June 2016 The Agreement on Cooper- The documentary “Sun for ation between Downside the Best Friend” was created Up and the Ministry of So- in the joint project of Down- cial Development of Kirov side Up, Mars Company, rep- region was signed. Based April 2016 resented by Pedigree brand, on this agreement Down- Downside Up was recognized and the “Hors” Dog Training side Up will develop further as the best company of the Center on employment sup- cooperation with profes- year in “Social Projects” port and guidance for young sionals of Kirov region in the nomination for “Charity adults with Down syndrome. area of family support, ed- Sports” in National Business It was awarded a Silver Lion in ucation and integration of Award “Best.ru/Company “PR” nomination at the most children with special needs of the Year – 2015”. Evelina prestigious annual adver- into society. Bledans, the famous TV pre- tising and communication senter, longstanding friend festival “Cannes Lions”. This and honorary ambassador video gained more than 7 mil- of Downside Up represented lion views on Youtube. March 2016 the Fund and got the prize. On the World Down Syn- drome Day, Russian social April 2016 network VKontakte and Charitable Fund Downside Charitable Fund Down- Up and Russian State So- side Up conducted an un- cial University signed the precedented collaborative agreement on cooperation awareness raising and for inclusive education and charity campaign in support inclusive adaptive phys- June 2016 of children with Down syn- ical culture. The reached drome. 300 materials about agreement is a valuable sup- “Charity Sports. Kids” exhi- this campaign featured in port to Downside Up’s work. bition, organized by Down- the media, it reached more side Up was held in the than 20 million readers. State Department Store (the GUM) in Moscow. There March-April 2016 are photos of famous sports- Drama studio’s partici- men, actors, singers and TV pants prepared shadow presenters together with play performance “Luko- young pupils, attending the morie”. The performance Fund. Over 24 days the exhi- became a prize-winner of bition was attended by more the 3rd Open festival of than 300 thousand people. children’s and youth theat- er studios “Tochka, tochka, zapyataya”. The resources of the nation- al largest social education institution will help the Fund to disseminate experience built up over many years to students and professionals. Downside Up Annual Report, 2015–2016 5 SUPPORT TO FAMILIES RAISING CHILDREN WITH DOWN SYNDROME NUMBER OF THE REGISTERED 5457 FAMILIES by the 30th of June, each year 4965 4341 3533 2942 2377 1855 1422 1047 837 639 253 345 438 505 54 83 127 190 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 GEOGRAPHICAL DISTRIBUTION OF REGISTERED FAMILIES as of June 30, 2016 Other countries Moscow Belarus Moscow region Kazakhstan 14 % 2% 3% 2% 9 % Central Federal District Ukraine (without Moscow and Moscow region) 6 % Crimea Federal District 1 % 10 % 3 % Far East Federal District 5,457 families 8 % Siberia Federal District 9 % North-West Federal District 6 % 7 % South Federal District Urals Federal District 3 % 16 % North Caucasian Federal District Volga Federal District 6 Downside Up Annual Report, 2015–2016 STATISTICS ON SERVICES PROVIDED TO FAMILIES DURING THE REPORTING PERIOD: 5,406 books sent to 832 families; 7,877 copies of “Take a step” journal sent; 1,851 face-to-face consultations by professionals (special education teachers, speech therapists, psychologists, doctors); 500 at home consultations by special education teachers; 364 distance (phone and e-mail) consultations; 619 families received consultations through the online consultative forum; 223 group teaching sessions in 10 groups involving 105 children; 189 group psychological sessions in 7 groups involving 214 families; More than 60 parties, festivities and other events. SERVICES PROVIDED TO FAMILIES DURING The Fund’s work is based THE REPORTING PERIOD: on family-centered model Distribution of “Take a step” journal to all the families registered at of support. It includes psy- Downside Up who request it – 2 issues per year; chological, pedagogical, and Distribution of Book Packs published by Downside Up to all newly social support not only to a registered families who request it; child, but to all family mem- Face-to-face psychological, pedagogical and medical consultations bers bringing up a child with (by appointment); Down syndrome. Distance consultations through Downside Up’s online consultative forum. “If it were not for your support, we would have thought that Additionally, families from Moscow and our child is uneducable. Thanks Moscow region receive: to your support we believed in Group meeƟ ngs focusing