Welcome

We are a UK Registered Charity with  International Links and a World-Wide objective to improve the outcome for children 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 this condition.   In the developed (Western) world there are programs to detect these babies before they are born and parents are advised to get abortions (terminations).  In the UK  92% of those parents will accept that advice. This screening program costs millions but it is regarded as a success story by the medical authorities.   Most doctors think a medicine to reduce a mental handicap is impossible.  But breakthroughs have already been seen in animal models for Down syndrome (Ts65dn mouse at Stanford).  The doctors don't know these things so they continue to support a nationwide screening program that tries to prevent these babies being born.

In the UK, about one birth per 1000 the baby has Down syndrome,  that's about 700 births each year.  In the USA there will be about 4,000 births,  and in Europe another 5,000 births.  People are delaying getting married and having families, this results in a higher risk of a T21 pregnancy so the trend is for more of these pregnancies.

There are over 10,000 births every year in the USA and Europe where babies are born with a handicap that needs medical research and the parents dont even know that research is underway, that this research is showing great promise, and we now need their help to get a medicine into human trials.

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 is on our our website.  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.

They have amazing strength of character, they are an example to the rest of us and seen as a blessing by most families.  They deserve much more from us and they get the least support for research.  Progress with research is very slow for that reason and brain research is very expensive.  It is perhaps poetic justice that as we live longer and longer we will end up with brain degeneration and a mental handicap that might have been prevented if we had helped these children.   The future can be a very different and we think in terms of Bright Beginnings and a much brighter tomorrow.  We are doing the research that will make that future happen. Now we need parents and families to see that same future.

These children are so brave and long suffering,  they give us their love, and they trust us completely.  They cant even know the help they need and they cant ask for what they need.  But they are at much greater risk of illness and their lives are 20 years shorter than they should be.   We would all want research and forgo a few high street outings and treats if our lives were to be cut short by 20 years.  None of this needs to be happening, we live in an age of miracles where we can find the medicines needed to help everyone who has Down syndrome.  That research is underway but it is greatly underfunded and it needs to be integrated into mainstream research.

Parents form support groups and they find comfort in a sense of family. Some parents will even say they dont want the research and this child is perfect.  Indeed they are more perfect than most of the human race but there are medical problems where we need to find medicines.  Most of the problems can now be treated with modern medicine,  the impaired memory is the last big challenge.  We can improve that memory with a medicine and we can make life much easier and more normal.

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.

A lot of the mental handicap is caused by poor short term memory needed to think faster and to develop long term memories.  A little improvement can make a huge difference to thousands of  lives and allow them to have a happier and more independent life.  A modern miracle that even parents are afraid to think about because they think their perfect child may change. But they need have no fear of that happening, a better memory can only make their lives easier and happier it cant change who they are.

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

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 which are collectively described as Down’s syndrome.

Funding

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

Join the DSRF on  Facebook  Click Here You can send us your stories and pictures.

• You can read the latest news on research and meet parents, professionals and friends of the DSRF
• You can help us to get this research funded every penny will be spent for that objective.
• Charity begins at home - with  our children -  and they will help the world.