IN LOVING MEMORY OF PETER ELLIOTT, LATE RESEARCH DIRECTOR OF THE DSRF-UK
Peter Elliott put together the above video two years ago but didn't get to publish it. Hes telling the story of how the DSRF-UK first began 20 years ago. Sadly Peter is no longer with us but his heart remains in and with our charity. Peter spent every day, from it's creation until his passing, working tirelessly for the charity without compensation. His only desire was to help all those with DS through research and knowledge. He is missed by many! Rest in peace...you have definitely earned it.
The Down Syndrome Research Foundation is the inspiration of Peter Elliott, Founder Member and our Research Director. A Registered Professional Engineer and Businessman. His son David was born in 1985. In 1995 he discovered parents were using vitamin therapies and claiming health benefits. There was no medical research underway to test these claims. So he resolved to get that research underway. He quickly ran into problems with doctors who believed research impossible because this was a fixed genetic condition that could never be treated. But in fact many of the health problems are no different from those seen in the general population. There is simply a higher risk when you have Down's syndrome.
In 1996 the DSRF was established as a national charity. Conferences were organized that were attended by about 600 families. He organized a systematic review of research and this was published in 2000. This report showed there was a need for a research project and with the help of one other parent they talked to the The Institute of Child Health and initiated the biggest Down's syndrome research project in history. 156 babies were in that research project that took over 5 years from start to finish at a cost of over $1 million.
On September 17th 2011 we held our conference "The search for a medicine for Down's syndrome towards an International research alliance". A wide variety of professionals and importantly, parents were in attendance. This was a conference different to any other held before for Down's syndrome. Researchers where asked to spend very little time presenting what they do know from their research and to focus their minds instead on what must be done next and how to make that possible though collaboration. Please watch the footage made available by the DSRF UK and Alzhiemer's Research UK and consider making a donation to continuing this vital work.
The DSRF objectives have developed over a 15 year period and the Human Genome was decoded during this time frame. It has become very obvious that research into Down syndrome is multi faceted and we need research collaborations with these research teams investigating specific aspects of a disease seen in the general population but with a higher incidence in people including children who have Down syndrome. To help our population we must learn how these additional genes are influencing and modifying the function of the human genome. Genes make chemicals called proteins and they interact with other genes so there is a cascade effect that is very difficult to understand but the end result can be seen in the biochemistry of the body and the brain. By learning what is happening we can develop treatment(s) to normalize the chemistry which in turn will reduce the incidence of problems.
Research is not only a possibility it is going to be essential to human life in the next 100 years. Scientific discoveries are happening at an incredible rate. Advanced technology that once was not available to people with Trisomy 21 now exists to do this research. It is essential we have researchers working together to collaborate their findings. Translational Research, which involves translating all that is known and discovered in research labs around the world, needs to be shared where it is needed such as helping doctors and researchers who see people in their hospitals and clinics. Collaboration across countries and disciplines will be vital to the progress of research for people with Trisomy 21.
Our vision is to undertake research and find ways of improving the quality of the lives of people with Down Syndrome (Trisomy 21) by:
- Carrying out research to improve our understanding of the medical conditions and disabilities which are associated with Down Syndrome, and find ways to diagnose, prevent, treat and cure these illnesses
- Undertaking a commitment to ensure that our research findings are widely disseminated and used to improve the lives of people with Down Syndrome
- Educating and helping the parents, professionals and the public to have a better understanding of Down Syndrome, and the impact that nutrition and lifestyle can have on the wellbeing and quality of life through preventative measures for Alzheimer’s, obesity, heart disease, dementia and leukaemia
- Joining with and working in association with other groups who are undertaking research in areas that concern Down Syndrome in order to achieve the greatest impact
- Working towards real collaboration where medical experts and research professionals come together to both undertake research into the medical conditions and disabilities associated with and provide support and treatment for children and adults with Down’s Syndrome, their families and carers.
The DSRF is funded by private and corporate donations and we invite you to