Who We Are
We are a UK Registered Charity with International Links and a objective to improve the outcome for all people born with Trisomy 21 (T21) which is the cause of Down syndrome (DS), and the most common cause (at birth) of learning disability (mental handicap).
Trisomy 21 happens at conception. About 1 in 400 babies are concieved with three copies of chomosome 21. Read more about T21 in the FAQ section. People with T21 have very full, happy and active lives but most have some form of intellectual disability and increased rates of congential and some acquired conditions.
For many years scientists believed that it was impossible to do anything to treat or intervene medically to lessen the effects of T21 in the person's health and welbeing. The main reason for this was the fact that there are over 500 genes on chromosome 21. However exciting advances within the last 10 years have linked particular genes and biochemical pathways to the particular problems seen in T21.
It is now felt it is more than a hope that T21 can have treatment or treatments to help them live a life they choose. The majority of the medical and scientific community are unaware of these advances. Drug company Roche announced a upcoming clinical trial for people with T21. We hope many more will come soon, but we need your help.
In the UK, about one birth per 1000 the baby has Down syndrome, about 700 births each year. In the USA there will be about 4,000 births and in Europe 5,000 births.
In the UK a free screening program is offered to 100% of pregnant mothers (a simple blood test), many parents will refuse that screening and 8% will want to have this baby even when they know the baby is high risk of having Down syndrome and sometimes the baby is born and it does not have Down syndrome, so this test is not 100% accurate. Often parents will ask our charity for information and they read our new parent booklet - Bright Beginnings. Expectant parents are frightened and uncertain and the future is a great unknown and then they learn the truth. These children enrich our lives and they teach us how to live better lives. Recent research has confirmed what many people knew.
People with T21 deserve much more from us and they get the least support for research. Progress with research is very slow for that reason. That research is underway but it is greatly underfunded and it needs to be integrated into mainstream research.
These children are a huge asset to the human family - every one of those genes, are our genes - including those extra genes. They are our children, we owe them our first priority.
Note: The medicine we seek is linked to the same medicine we will all need as we live beyond age 80 and we develop dementia. Down's syndrome can be the fast track we need to finding that medicine for the human race.
Our mission is to undertake research which will help to identify and develop interventions which alleviate the medical, physical, developmental and cognitive conditions associated with Trisomy 21 (T21) which are collectively described as Down’s syndrome.
At the backbone of our work is the premise that people with T21 also deserve the innovation and improved research techniques seen and used to research and treat other conditions and illnesses over the last 50 years. This is regardless of the screening programmes offered, however precise. We do not see antenatal screening as a 'treatment' for T21.
Our charity has an understanding of the challenges, the latest technologies and a good relationship with many important researchers. We have a dynamic, realistic but hopeful view of the potential of good medical research for people with T21. We are leading the way in promoting and facilitating medical research for T21 in the UK and the rest of the world.
We receive no Government funding and rely totally on voluntary donations from individuals, companies, community groups and grant making trusts. Our need to fundraise and generate income is constant and we appeal to you to support us if you possibly can.
To make an on-line donation please click here
- You can read the latest news on research and meet parents, professionals and friends of the DSRF
- You can send us your stories and pictures
- You can help us to get this research funded every penny will be spent for that objective.