Feb 7, 2017

DSi's work in Africa

The Rwanda Down Syndrome Organisation is now up and running, with a board of trustees, a paid General Secretary and an office in Gasabo District, Kigali. They have been busy making contact with families of children with Down syndrome and adults with Down syndrome in Kigali. This has allowed them to build up a membership base, and they held their first General Assembly on Friday 4th February. We are in regular contact with them to provide guidance on running their organisation, and are working with them to plan their activities strategically.

We recently supported the creation of the African Down Syndrome Network, an umbrella organisation of national Down syndrome organisations from countries across Africa. We have helped them to reach out to new members, worked with them to improve their organisational procedures, and are currently providing financial and technical support for them to build a website and develop their online presence.

Over the last month we have been working with the Penny Aika Down Syndrome Foundation in Tanzania to develop their advocacy strategy to better influence the government. They have met with ministers of the Tanzanian government and have organised opportunities for members of their organisation with Down syndrome and their families to represent themselves and their interests. We are currently working with them to develop evidence based position statements and proposals targeted at specific policy areas, to be presented to ministers when they next meet.

We are working with Down Syndrome Foundation Nigeria to develop a project to support young adults with Down syndrome to access paid employment. Currently Nigeria does not have opportunities for people with Down syndrome to access paid or unpaid employment, and many spend most of their adult lives confined to their homes.

Our work in Africa is having a clear impact, supporting the development of strong Down syndrome organisations and enabling them to address key issues faced by people with Down syndrome in their countries. Your generous donations have made the significant progress that we have made in Africa possible, and any future donations will allow us to push on with improving the lives of people with Down syndrome across the continent.

Jan 23, 2017

Supporting New Babies with Down Syndrome in Peru - Thank you for your Donation

An enormous thank you to everybody who has given generously to this project, we have reached our target and are now working with our partners in Peru to get activities started. As you know, this project is aimed at providing 150 parents who have just found out that their child has Down syndrome with information kits; and running meetings for 40 families in which they can receive vital support and talk to other parents about their experiences. This project will have a huge impact on the lives of babies with Down syndrome, and provide a foundation for a happy, supportive family environment for them as they grow up.

We have been working closely with our colleagues at Sociedad Peruana de Sindrome Down (SPSD) and they now have all the activities planned in detail, included a timetable for implementation. We are currently finalising our contract with them so that we can send them the money that you have donated, and they can begin working with families.

They have established excellent relationships with local hospitals and diagnosis centres, and medical staff are very eager to have information kits that they can provide to new parents. The meetings have been planned to allow new parents to meet self-advocates with Down syndrome and families with older children, which will provide positive examples of the happy lives people with Down syndrome can live. There will also be guidance provided by physical, speech and occupational therapists to provide crucial information about the early development of their children.

Thank you once again for your generosity, all the money that you have raised will contribute to better informed, well-supported parents who are able to provide their young children with Down syndrome with the love and care they deserve. We will keep you updated as the project begins so that you can see for yourselves the impact it has on these families.

Watch the testimonial video prepared by SPSD, featuring interviews with parents of young children with Down syndrome who have visited SPSD parent meetings. https://www.youtube.com/watch?v=O5lpKrliXKU

Nov 10, 2016

Update on DSi's Work in Africa

We sincerely apologise to you, our key donors who helped us begin this project to support people with Down syndrome in Africa, for the delay in submitting this update report.  

In the last 5 months, we have stayed in close contact with our organisation members in Botswana, Nigeria, Mauritius and Uganda, using the funds you gave us to offer ongoing consultation advice. We have also been trying very hard to raise funds for the next phase of this project, which is to employ a capacity development manager whose dedicated role will be to work with these organisations week to week, guiding their staff training and organisational development and carrying out capacity and training assessments. Only then will we know exactly what they need as a highest priority to provide maximum benefit to the children and adults with Down syndrome (e.g. access to healthcare, education, employment, social participation or self-advocacy) and how to go about doing it in an efficient and sustainable way, making best use of scarce funds.

In September, we received specific project funding to assist the formation of a new Down syndrome organisation in Rwanda, the first in this country. There is a severe lack of healthcare professionals with even a basic knowledge of the medical conditions which can affect people with Down syndrome in Rwanda, which results in childhood deaths. There is also a big knowledge gap among early development and education professionals about the interventions which can assist cognitive and social development at an early age, so crucial to children with Down syndrome developing and being included in society. Inclusion in schools and society does not happen in Rwanda now.

DSi has received funding to onward grant to this organisation to set up an office, employ a manager and set up a governing board/general assembly made up of parents and professionals. The funding will allow the organisation to run for 1 year from November 2016, with DSi providing expert advice to set up basic infrastructure and then embark on project work focusing on educating medical and education professionals.

Our work in Africa is progressing steadily. But if you are able to support us again with a donation, we can accelerate this process. Our model of support to these organisations is based entirely on building their capacity to sustain themselves, provide accurate information and improve attitudes to ensure that people with Down syndrome can be fully included as equal members of their communities, able to access crucial services but also make a positive contribution as children and adults. Please consider supporting this campaign again.

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