Name of the organization : DOWN SYNDROME FOUNDATION UGANDA (DSFU)
Formerly The Uganda Down’s syndrome Association
(TUDSA) (Formally Uganda Down’s Syndrome Association)
When it was formed : DOWN SYNDROME FOUNDATION UGANDA was first
Formed in Dec, 2005
Registration status : The organization is registered at a Voluntary,
Non -denominational / Political / Profit making,
National organization in Oct 2006 Certificate /
Registration No 6137 / S. 5014/6639 respectively
Location : Mbuya Zone 5 Ismail / Kyalema Road
P. O. Box 24244 Kampala – Uganda
Tel. Office: 414 220 213, Mob + 256 752 417 859
/ +256 779 761 090
E- mail : firstname.lastname@example.org
Website : www.tudsauganda.org
Background Information on Down syndrome:
Down syndrome (DS) is a genetic condition ( abnormality ) caused by the presence of an extra chromosome number 21 inside each of the body cells which randomly affects about 1 in 700 to 1,000 babies born throughout the world.
People with Down syndrome are mentally retarded and it accounts for approximately 5-6 per cent of intellectual retardation. Statistics on the number of people with DS in Uganda is not available. However, internationally, the number of babies born with DS is estimated at about 1 in 1,000 births. With the Ugandan population of 36 million, this therefore translates to about 36,000 people with Down syndrome in Uganda and this number continues to grow.
Background Information on the DOWN SYNDROME FOUNDATION UGANDA
The DOWN SYNDROME FOUNDATION UGANDA was founded in 2005, by Michael Okiro – Emadit and his wife Joyce Achom and James Omoding as founder members of the organisation and dully registered as a charitable local NGO on 19th October 2006,
It is Non – political, non–denominational, voluntary, Non – Governmental, parent led organisation which is specifically helping and supporting children / Adult with Down syndrome in four sector areas of Health, Education, awareness raising and social welfare as well as skills training for mothers of the affected families to improve their household income so that they can support their children.
DSFU is therefore the only organisation that has advanced in advocating for the equal rights specifically, for people with Down syndrome in Uganda.
The organisation acts as a coordinating, facilitating and enabling body of and for individuals, groups of persons, communities and organizations / institutions involved in helping people with Down Syndrome ( Self advocates )and their families in Uganda
In 2011, DSFU was recognized as National representative organisation for people with Down Syndrome in Uganda and Country representative organisation of Down Syndrome International (DSi), and in Oct 2011, it was one of the signatory to a petition by Andrew Boys of DSi, to the UN general assembly which declared 21st March , World Down Syndrome Day.
In2014, DSFU became one of the Founder Members of Africa Down syndrome Network (ADSN) which was formed in Johannesburg in South Africa under the Initiative of Down Syndrome International and Down syndrome South Africa.
African Down Syndrome Network (ADSN) is a working network consisting of national organisations for people with Down syndrome in Africa. Its’ key focus area is to promote the inclusion and capacity building for people with Down syndrome their families in Africa, and its
Main objective is to promote and protect the rights of persons with Disabilities, specifically for persons with Down syndrome in Uganda and Africa
In 2015, DSFU represented Uganda to attending the World Down Syndrome congress Conference in Chennai India.
In August 2016 DSFU became the second International member of Global Down Syndrome Foundation / Global Livingston Institute (GDSF / GLI) – USA
In Nov 2016 / May 2017, DSFU was one of the few African countries selected to attend International trainings on CRPD / SDG Phase 1 and 11 in Accra – Ghana and Nairobi – Kenya respectively.
Geographical area of operation
The organization operates countrywide with now its regional branches in Fort-Portal in Western Uganda, Soroti in the Eastern region. More regional branches are planned to open in Gulu Northern Uganda and Kabele in the south over the next five years by 2023.
Membership: Currently the organisation has a membership of 500 persons with Down syndrome in our data base and the number keeps on growing, however other members to the organisation Include,
⦁ Adults and Children with DS ( self advocates)
⦁ Parents of persons with DS
⦁ Relatives and caretakers of children with Down syndrome
⦁ The professionals who work with them and Individuals who are committed to the cause of DS
Internationally DSFU is a member of :
⦁ Down Syndrome International (DSi) and a representative organization for persons with Down syndrome in Uganda
⦁ One of the founder members of Africa Down Syndrome Network (ADSN) formed in South Africa in 2014.
⦁ Global Down syndrome Foundation ( GDSF ) / Global Livingston Institute USA
The DOWN SYNDROME FOUNDATION UGANDA member of:-
⦁ Development Network of Indigenous Voluntary Associations (DENIVA)- Uganda Network of Non-Governmental and Community based organization (NGOs/CBs) which provides a platform for collective action and voice to voluntary local associations.
⦁ Uganda National NGO Forum – The Uganda National NGO Forum is an all inclusive membership organization of NGOs and their networks in Uganda.
⦁ Currently, The Uganda Down Syndrome Association is in process of attaining membership to National Union of Disabled Persons of Uganda (NUDIPU) and Quality Assurance Mechanism (QUAM)
The organization has a good working relationship and coordinates with the following organization
⦁ Down Syndrome International ( DSi )
⦁ Down Syndrome Association UK
⦁ Chain of Hope
⦁ Global Down Syndrome Foundation / Global Livingston Institute ( USA )
⦁ The Uganda spirit USA ( US based organization )
⦁ Bishop Primary School for special needs Mukono
To develop a healthy, literate and economically secure Uganda Down Syndrome community with equity that is well integrated into the overall Uganda society.
To have a well organized and facilitated Down Syndrome Community that has access to specialized Health, Educational, and counseling services
Empowerment of people with Down syndrome with a focus on children below 20 years and their families / caretakers
Association Objective and strategies
⦁ To facilitate access to specialized and appropriate Health services to children with Down syndrome by; creating awareness and linkages and, strengthening coordination mechanisms, networks and alliances, and linking them to health services providers and meeting costs of those medical services rendered.
This boy had a successful heart surgery in India
⦁ To facilitate access to specialized educational and vocational skills training to children born with Down by; creating awareness and linkages and, strengthening coordination mechanisms, networks and alliances, and linking them to special needs education and vocational training services providers and meeting costs of their Education.
⦁ To provide welfare / counseling services to children born with DS and their families or caretakers respectively in order to mitigate psycho-social effects on them and improve on the their care and management, to enable them reduce the stigma and vulnerability of children born with DS creating awareness, strengthening coordination mechanisms, networks and alliances, and linking them to counseling services providers and meeting costs of those services.
⦁ To promote income generating activities and improve the livelihoods of households and families that have or that care take children born with Down syndrome and ensure sustainability of the association.
To raise awareness at all levels on the magnitude and associated health, educational, socio – economic and development implications of Down Syndrome on the Ugandan society
Strategic Challenges they face with life in Africa with their families.
⦁ Underfunding for the organisation fighting for their rights
⦁ Discrimination by the society
⦁ Lack of employment for self advocates
⦁ Lack of opportunity to marry and have independent families
Strategic challenges in the Uganda context as a National Down Syndrome Organisation
⦁ Lack of funding to curry out specialized Health services to children with DS and especially those who have heart defects that require surgery
⦁ Lack of funding to help children attain educational Services
⦁ Larch of funding to provide , Counseling and Social Welfare Services to parents relatives / caretakers and the affected families
⦁ Poverty among affected households
⦁ Lack of Community, Civil Society and Government’s awareness
⦁ Discrimination by the society in which they live in
⦁ Lack of financial support by government to implement the planned activities.
DSFU FUTURE PLANS:
The ultimate goal therefore is to construct an integrated and self-sustaining National training Institute ( center ) where children with DS , Parents , Teachers, and the professionals who work with them can acquire knowledge and or be trained , but with special emphasis on academic / skills training for children with Down syndrome once the funds are available by the year 2023 All Children who have Down syndrome will receive free education but the cost of their education will be met by the internally generated funds and other donations raised from donors and well wishers.
The center will also have a health facility to provide specialized health services eg physiotherapy, speech and language therapy. To children with Down syndrome and will serve the community as well. The internally generated funds from the community will be used for the sustainability of the center.
Besides: This organisation will also promote income generating projects and product value chain development in order to contribute to the affected children and their families’ improved household incomes and livelihoods and to ensure the sustainability of the organisation .
The overall aim of this sector is to generate funds for the future sustainability of the organisation beyond the first ten years of the seed donor funding by using the internally generated funds from the income generating projects.
The strategic goal is to have viable and sustainable income generating projects and product value chains and the beneficiaries’ household incomes and livelihoods improved and the organisation well integrated and self sustaining.
WHAT WE NEED FROM GOVERNMENT.
⦁ We would like the Government to come in by financially supporting the organisation in implementing the activities especially in the construction of the planned center
⦁ To link the organisation with potential donor partners
⦁ To take responsibility in financing the cost of heart operations for children who are affected.
To enable people with Down syndrome have access to quality Health, Education, and skills training so that they can live an independent lives as adult
To create awareness on the rights of people with disabilities so that they can have increased knowledge and responsibilities for self reliance
Association Core Value:
In order to give effect to our vision, mission, the following are our team, personal and professional values’
To promote equity by providing equal Health, Educational, social welfare and counseling opportunities for all the Down syndrome Community to benefit, serve and excel by upholding fairness and justice.
To practice trust by being a team that is reliable, dependable, committed and honest with each other and stakeholders as we serve people with Down syndrome and their helpers
To value and accommodate people’s opinions, views and contributions, to acknowledge their values, traditions and customs irrespective of their status in society.
To recognize, accept and value the differences that exist within the people we work and live with, and use their differences as a learning experience to enrich our work.
To work in a manner that values people for who they are and to enable them to participate in, and have ownership of their development efforts to address Down syndrome issues
To exhibit maximum professional conduct in the facilitation of the provision of sustainable health, education, counseling and economic services in order to satisfy beneficiaries expectations
To value and recognize the uniqueness and worth of every individual in society in their own right and especially the rights of women who have fallen victims of abuse by men
Board of Directors
S/ No Names Profession Designation
1 Dr Thelma Awori Consulate General of the republic of Liberia to Uganda Patron
2 Michael Okiro – Emadit Medical Assistant / Sonographer Director
3. Mr. James Omoding Planning and human resource Development Chief Executive / Secretary of the board
4. Sr. Joyce Achom Registered Bachelor of Science in nursing / midwife Health Coordinator
5. Mrs. Kantono Jane Bachelor in special Needs education Education Officer
6. Mr. Eseru Stephen Bachelors in accounting finance / Audit Accounting Officer
7. Dr. Dan Tumwine Masters in pediatrics Health Officer
8. Mr. George Basil Okudi Diploma in IT and secretarial services (Self advocate ) Executive Secretary
9. Mrs Nabukenya Joweria Advocate LLB(Hon ),MUK, DIP (LDC Legal Officer
⦁ Director – Head and overall, supervision and Management
⦁ Chief executive – Administration, Draws Programs outlines for a given activity for Implementation
⦁ Finance – Draws budgets and administration of finance
⦁ Health Coordinator – Ensures the implementation of a given activity in the Health sector
⦁ Education Coordinator – Ensure the implementation of a given activity in the Education sector
⦁ Community based Social workers – Interacts with and informs the community on issues related to Down syndrome at grass root level