The Downs Syndrome Research Foundation UK
     
The Downs Syndrome Research Foundation UK
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Down's Syndrome Translational Research Initiative

Update on this meeting:    Memory research

In a few months we will need families to take part in a research project to test a new medicine that have shown great promise in animal studies where they achieved the major objective to improve memory.  These were the Ts65dn mouse models for trisomy 21 in humans. In those studies the animals had poor memory and could not remember how to get through a maze.  With this new medicine their memory was so improved their performance in memory training tests was the same as a normal mouse. This is pretty amazing and exactly what we might hope to happen. These are medicines like those being developed for dementia and Alzheimer's.

Animal studies always take place before human trials to detect medicines that work and which have no bad side effects. Safety is a huge concern of course and this is the way all new medicines are developed and tested. Before we can even proceed with a study and get it funded we need to know there are parents who will take part and volunteer on behalf of their children.  The age for taking part in these studies will be decided when we see who is volunteering and the ages of their children.  Probably starting with older children who have good verbal skills and with young adults.  Sign up now.  It helps us to get funding if we have parents wanting to be part of the research project.

UK research will be based in London.  To get on this list:   Email:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

International Meeting --  Down Syndrome Cognition Research.

Royal Society of Medicine - 1 Wimpole Street, London, England

Note:  This very successful meetings was held  Thursday July 29th,  2010

Paul and Patty Watson and the DSRF-UK  will co-sponsor an International meeting at the Royal Society of Medicine to discuss Down Syndrome Cognition Research. Leading brain researchers from the US, UK, France, and Switzerland will gather to discuss current Down Syndrome (DS) related brain research, opportunities for collaborative projects, and expanding DS research into related fields.  The meeting will formally address the development of protocol for joint international projects which will be able to access private and public funding for research.  The focus is on research that will translate from the lab to drug development.  Representatives of 4 major Down Syndrome research charities will also participate in the meetings.

Attendees hope to speed the pace of development of human treatments based on the strong existing research in the areas of brain lipids, DS neurochemistry, and successes in improving mental performance in mouse models of Down Syndrome.  "We believe that in the next 5 to 10 years, we will be able to improve the memory, learning, and speech capacity of people with Down Syndrome so that success in school, independent living, and real employment will be the new expectation for them," said Patty Watson, a Bank of America associate and fundraiser, who has a child with DS.  "We owe it to people with DS that we seek these advances in the same way we seek advances in treating other medical conditions such as Alzheimer's," continued Patty.

Patty Watson is a board member of Lime Connect, a foundation whose mission is to unlock economic potential through the increased employment of people with disabilities.  Patty relates  "I welcome this opportunity to seek a more promising future for those with Down Syndrome."

For more information about this meeting, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Information on our research history click on the "About Us" tab at the top right of this Home page.

Want more research?  How about a donation to support a Marathon Runner ?

CLICK on this link -  http://www.justgiving.com/Edyta-Wierzbowska These are real people making a great effort to help our children. They deserve your support. and encouragement.  You can do a fundraiser the same way or with some new idea.  There are ideas on our website and you can make your page on Just Giving.

We have great needs and responsibilities - but hardly any income

Children smile to get your approval and your love,  thats especially true when the child has Down's syndrome . They never get beyond the normal mental abilities of between 5 and 13,  (average is age 8).  They have to learn to be very patient and long suffering. Parents can find this endearing but its not much fun to be set apart as an adult and deprived of much that life has to offer.  Imagine if you looked like an adult but your mental abilities were like a child.  I think we would all want a medicine to become normal. Every one of their genes are our genes, even the extra genes are our genes.  but a few of those genes are causing lots of problems in addition to the mental handicap.   Lives are shorter by 15 to 20 years.  20X higher risk of Leukemia and 20X higher risk of Alzheimer's.   Our research targets these problems.  Its very expensive and we get hardly any income but we are making great progress.

INCOME:  Animal charities raise 1000x more income. We should care a lot more for the needs of OUR children but donations tell a different story.  You can change that situation with your donations.   We have no paid employees,  no expensive adverts on TV,  no expensive offices.  100% of your donation will be used to get research underway,  not to make us rich.

Please select a method of donating, by monthly direct debit or single payment by credit/debit card:

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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.

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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 rely totally on your donations.  99% of our hits are parents wanting research but donating nothing to get that research funded. The parent support they seek is right here but they cant believe its even possible.  BUT IT IS and its amazing research.

The government screening programs ARE NOT a cure - these programs want to get rid of these babies by frightening parents and recommending a termination of the pregnancy, with an abortion.   Thats a very negative program and its dreadfully unfair to our children.  Especially when they need to fund the research and help us to succeed.

We have wonderful doctors and we have medicines proven to make memory near normal in animal studies and now we need the human trials.  Your support ensures our success.   All of our workers are volunteers and they give their lives,  so what will you give?

100% of your donation will be used to get research underway - we have no paid employees - no expensive offices - no expensive adverts on TV.    To make an on-line donation please click here

Membersip

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 - Help  our children -  and they will help the world.

DSRF UK Newsletter

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Issue 10 - 2009 - Christmas Newsletter December 2009 Read the latest newsletter online...

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