Downside Up, a British- Russian charity, provides support and advice for families raising children with Down syndrome, develops innovative children training and parents support methods, disseminates knowledge and experience among Russian professionals , and works towards raising public awareness about Down syndrome with the aim of changing attitudes. Downside Up provides all its programmes to families free of charge. From the first days of its existence Downside Up has followed the best practices of leading Russian and western scientists and practitioners. It has established family centered services and a transparent system of management and governance.
The centrepiece of Downside Up’s work is its Family Support Centre in Moscow, which provides support and advice for 8800 families from all over Russia raising children with Down syndrome. The Centre’s highly professional staff of special education teachers, speech therapists, psychologists, specialists in motor and cognitive development, and medical consultants work with children and parents to ensure that all aspects of a child’s development needs are met.
Downside Up’s mission is to improve the quality of life for Russian children with Down syndrome.
How we changed lives of people with Down syndrome in Russia
- Federal and local governments develop system of early intervention programs and grant financial support to charitable activities aimed at people with DS. 11 regions adopted protocol of correct information process to tell diagnosis of DS to family
- Parents of children with Down syndrome in 30 regions of Russia have opened charities to support local families
- Unique library for Russian speaking families and specialists consisting of books, brochures and journals written by our specialists is available now online and in printed versions
Downside Up’s main achievements
- We created different forms of face to face and online support to families and reached 10650 families by our services
- We created unique library for families and specialists consisting of books, brochures and journals written by our specialists or translated by us. - 286 000 copies in total were disseminated, average 60 000 unique visitors monthly of our internet library
- We made certified educational courses for specialists and educated more than 20 000 specialists and parents. Total number of participants of educational events – 43 000 participants
- Downside Up has become a recognized Russian and international expert in the area of Down syndrome. In April 2020 Downside was ranked at 14th place among 300 biggest charity foundations in Russia by the leading Russian ranking agency RAEX, ranking is published by the leading business media “Vedomosti”.
Impact of Syncona’s support – 2 important areas are funded by Syncona
Digital presence. We created internet portal with our library - average 60 000 unique visitors monthly. We actively support Russian speaking families in social media - average coverage of posts - 137 000 people, 65000 subscribers in FB, Instagram, VKontakte, Youtube, OK. In November 2019 Downside Up’s Facebook page was awarded as the Best Facebook Community. In June 2020 compared to June 2019 we have increased our audience in Facebook in 40 times and in Instagram in 1,6 times. Top 4 posts in Facebook have reach of 6.9, 1.6, 1.5, 1.1 million users.
Digital presence and development allowed us to continue our activities in full scope during the COVID-2019 pandemic. All our services, family consultations, group lessons are held online. We have even attracted more families and children with Down syndrome who live in remote areas of Russia.
Support from Syncona is highly appreciated in this area of our activities
Health care for people with DS
The problem is that in Russia, a physician may attribute symptoms to Down syndrome instead of to a new disease process because of the difficulty of obtaining a good history in light of limited expressive speech, a decreased tendency to complain of pain and a tendency to manifest medical problems as behavior problems. Throughout this project effort Downside Up hopes to impress the fact that having Down syndrome does not make a person inherently unhealthy, and that it’s a genetic condition not an illness. Health professionals in Russia should not discriminate against people with Down syndrome by either refusing to treat them, blaming health issues on Down syndrome in general, or considering only specific known health issues which may affect people with Down syndrome.
The project supported by Syncona is still in progress. As of July, 2020 the main achievement of our activities in this area is adoption of “Guidelines for Diagnosis Announcement” elaborated by Downside Up experts in 11 regions of Russian Federation by local Ministries of Healthcare and with support of local NGOs. This is a real success which we couldn’t gain without your support.
Feedback from parents
“I know that earlier (before the COVID-19 pandemic) Downside Up didn’t make any online courses. But I would like very much that this form of interaction between specialists and parents becomes regular. I am sure that there are other families who also need it very much. I am personally acquainted with families (raising children with Down syndrome) who live far from Moscow and cannot come to Downside Up but they do want to visit the center. They need an expert help and support in their children development. I am sure that distance courses would help to erase boundaries, expand geographic scope and reach more families raising children with Down syndrome.”
Irina, mother of a 4-years-old daughter with Down syndrome
“Dear Downsie Up charity specialists! We would like to express our deepest gratitude for your complicated precious work. We know firsthand how to raise and to educate “Sunny children”.. After visiting your web-site we saw that you are excellent professionals of your craft. We found a lot of useful information available for people living in the remotest parts of our country. It is so good that you share your methods that are applicable for special needs children throughout their life. It is especially nice that there are valuable ideas which support emotionally parents and their children” Margarita Popova and her friends. Visitors of Downside Up web-site from Volgograd region.