Home / Activities
Activities

1 2

Down syndrome in Ukraine

Down syndrome is a common genetic condition affecting around 1 in 700 babies. Over 420 babies are born with Down syndrome each year and there are an estimated 15,000 people living with the condition in Ukraine.

Down syndrome is a genetic condition caused by an additional copy of the whole or part of chromosome 21, most commonly in every cell. This genetic difference is present from conception and affects people with Down syndrome throughout their lives. Although it is a genetic condition, Down syndrome is rarely inherited. Down syndrome is associated with a variety of health issues, including congenital heart defects, hearing loss, thyroid disorders and early onset dementia in adulthood. Most of these medical problems are well understood and can be successfully treated. Down syndrome is also associated with developmental delays and learning difficulties. People with Down syndrome experience memory difficulties and the development of speech, language and communication skills is delayed. These delays and difficulties are becoming better understood, and effective teaching methods and early intervention approaches can now help young people with Down syndrome to achieve more. Until recently, all most babies with Down syndrome born in Ukraine have been given up by their families for care in institutions where they have received few opportunities to achieve their potential to live fulfilling lives. Today, many families are choosing to look after their children and people with Down syndrome have more opportunities for education and access to good healthcare. However, little support is available to these families. Medical care is often inadequate, leading to unnecessary illness or impairment. There are very few opportunities for children with Down syndrome to receive effective therapy and education to help their development.

3 4

The Ukrainian Down Syndrome Organization

The UDSO was founded in 2003 by families for uniting parents to aid development of their children and to change the attitude to people with Down syndrome in society.

The mission of UDSO is to improve quality of life and creating a new future for people with Down syndrome Ukraine. The organization provides information, advice and early intervention services to families throughout Ukraine. It campaigns to improve public awareness of the condition and to improve public policies.

 In 2010, the UDSO began a major three year project in partnership with Down Syndrome Education International, a leading UK-based charity, to improve support for people with Down syndrome throughout Ukraine.

Since starting the project in July 2010, the UDSO has opened a Centre in Kyiv, employing specialist staff, translating and publishing up-to-date information about health and medical care, early intervention and education for people with Down syndrome.

Charity project “Silver coin” is a joint initiative of the UkrSibbank and UDSO to raise funds to help children with Down syndrome. Due to this project in 2010 managed to raise funds to equip an exclusive specialized Early development center for children with Down syndrome. The next step in 2011 was publishing and distribution of special programs for the development and learning to read "See and Learn" , and in 2012 by the project were conducted special training workshops for kindergarten teachers , primary school teachers and their assistants, special teachers, speech therapists , psychologists and parents of children with Down syndrome. Thanks to the "Silver coin" in Ukraine was introduced innovative learning system of mathematics basics "Numikon". In 2013 were published 500 recommendations for parents and conducted complex diagnostics and counseling for 220 Ukrainian families.

7 8 9

Activities

The Ukrainian Down Syndrome Organization offers expert advice, early intervention services and up-to-date information to families, educators and healthcare professionals throughout Ukraine.

Our activities include:

  • individual assessment and consulting – providing expert advice direct to families and professionals
  • new parent support groups – offering accurate information and peer support when families most need it
  • early education classes– giving young children the best start in life
  • professional advice sessions for families– helping families support their children
  • information seminars for parents and professionals
  • conferences and workshops
  • web site and forum support for families
  • publications
  • awareness campaigns
  • Parent Club
  • volunteer program
  • cooperation with government sector, lobbying

Achievements

In a short period of time, the Ukrainian Down Syndrome Organization has made substantial progress launching new services, translating and publishing information resources, and raising public awareness of Down syndrome.

Our achievements include:

  • Ukrainian Stars for Children with Down syndrome campaign – raising awareness about the needs and abilities of children with Down syndrome and promoting social acceptance on national TV
  • Early Development Centre for children with Down syndrome is opened in Kyiv – providing expert support to 680 families throughout Ukraine, including early years services, new family support group, individual assessments and consultations
  • See and Learn programs translated, adapted and published – making it easy for 500 families to support their child’s early language development
  • Publication of 2000 thousand packs "Syndrome Dong" (general information, questions of medicine and early development) to be distributed to parents and professionals.
  • Educational conferences and seminars with the leading professionals from UK, USA, Netherlands, Sweden, Russia – offering up-to-date information and advice to over 1,000 participants
  • Membership in the European Down Syndrome Association– networking and sharing expertise with partners from throughout Europe
  • Silver Coin – national fundraising and awareness campaign UkrSibbank (BNP Paribas Group) and "Creating a new future" (Auchan) - national campaign to raise funds and improve public opinion and the quality of life of people with Down syndrome. Ongoing support of UDSO activities by our friends from the GSK Ukraine, Infopuls Ukraine (EVRY) and Zeelandia Ukraine
  • “Open hearts cup” - annual charitable mini-football, paintball and bowling tournaments – fundraising for the Early Development Center’s programs
  • Volunteer project “One day for a person with Down syndrome”
  • Project of online medical support for families
  • Model school education project – opening of the three experimental groups, implementation and evaluation of teaching methods, suitable for use in all Ukrainian schools pioneering and evaluating better teaching methods suitable for use in all Ukrainian schools

5 6

Impact

The Ukrainian Down Syndrome Organization is already making a difference in the lives of many hundreds of people with Down syndrome throughout Ukraine.

 We help to improve life for many people with Down syndrome by:

  • Providing early intervention classes for 72 children improving their early language, communication and cognitive development
  • Providing advice to more than 670 families from all over Ukraine helping them better understand the condition and how to best help their child’s development
  • Translating and adapting specialist teaching resources, printing and distributing 500 sets of the See and Learn. Language and Reading program to families and educators throughout Ukraine
  • Taking part in the working groups of the Ministry of Education and Science (on inclusive education and on developing preschool program for a special need children)
  • Taking part in the working group of the Ministry of Health to develop a medical protocol for Down syndrome, as well as disseminating current information to health professionals through the National Medical Academy of Postgraduate Education. P.L. Shupyk
  • Informing 1500 website visitors/day, over 1200 registered users of our forum
  • Kyiv City Council decision on including pre-schoolers with Down syndrome in mainstream kindergartens
  • Medical consultations for families online

 

Our work depends on the generous support of many donors.

10

Help is so easy!

 

  • Take part in the events of UDSO
  • Volunteer to help (translating, design, editing, video and photo, transportation, events)
  • Take part in project “One day for a person with Down syndrome”
  • Make an online donation at www.downsyndrome.org.ua
  • Draw up a charity bank card “Silver coin” – and 1% from payments for services and goods Ukrsibbank will donate for supporting programs for children with Down syndrome
  • Support programs of the Early development center of UDSO, making regular payments from your bank account
  • Provide help with goods and services
  • Involve your company in projects of UDSO
  • Demonstrate your creativeness and offer your own project!

  We are sincerely grateful to all organizations, companies and private donors whose support gives an opportunity to the families with children with Down syndrome in Ukraine to receive free and so much needed professional help.

To improve the quality of life people with Down syndrome in Ukraine, we still have a long way to go. Want to join us on the trip? Contact us for any questions, ideas or donations.

President UDSO:
Kurianov Sergei

+38 (044) 540-96-09
kuryanov-sv@downsyndrome.org.ua

info@downsyndrome.org.ua

Tel. +38 (044) 540-96-09
www.downsyndrome.org.ua

https://www.facebook.com/downsyndrome.org.ua

 


Добавить в Twitter