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| The History of EMDN... | |
| ...and 'Why Another Charity Founder' Paul Preston’s Story: January 2001 Founded by Paul Preston after his daughter died aged only 8 weeks on the 18th November 1992 at the Royal Manchester Children’s Hospital. Kristen Lesley Preston, the 3rd child of Paul & Rachel Preston, Kristen presented with poor feeding and floppiness from birth, while she was considered a quite baby. Concerns were raised that she was perhaps too quite “always sleeping & looking drowsy” breathing problems and fitting were also a common feature. Born on the 23rd September by normal delivery. Kristen died peacefully at 7.10PM in her Mum & Dad arms. Lactic Acidosis, Mitochondrial Cytopathy. Respiratory Chain Defects Complex I & IV. Many questions remained unanswered, why, what & how. Paul felt these questions should be addressed and answered. Not only for his & his wife’s sake but for future children and indeed others parents who may go through a similar experience. “Lactic Acidosis” what was this “Mitochondrial Cytopathy” also what was this? After an initial meeting with Kristen’s Peadiatric Metabolic Consultant Dr. Ed Wraith, Paul went about the tremendous task of researching information, asking questions and visiting researchers at Oxford University, Institute of Child Health, London & Sheffield Children’s Hospital. Eventually becoming a member of the medical library at the Manchester University, he also went back to college & the Open University to do further studies in Biochemistry & Cell Biology, later in Psychology & Sociology. While building up links in the UK, Europe & Worldwide with parents, doctors and researchers alike. An initial group was formed in 1995, three years later called The Lactic Acidosis Support Trust, for which Paul was Secretary & Co-ordinator. Paul was responsible for acquiring funds for the 1st UK conference on Mitochondrial Diseases in July 1996, with International expert speakers from the UK, France & USA. The event was well recived and booklets produced, with many professionals, families and affected children in attendance, which was truly encouraged. Funding was also recieved from the BBC Children in Need, to support traveling & hotel accomadation for the 60+ delegates. Later in 1996 Paul was invited to France to visit the Metabolic & Genetic Unit at the Necker Enfant Malades, Paris Children’s Hospital under the Directorship of Professor Arnold Munnich: A keynote speaker of the earlier 1996 meeting. In 1997 Paul was invited to the 2nd International Mitochondrial Symposium in Philadelphia USA. This meeting was a chance to renew existing friendships and to acquire new ones. This event was to be a turning point for Paul, who expressed concern to the organizers that there were no children, allowed to be at the conference, which the conference was supposed to be about. After all, this conference had the world’s leading authorities on mitochondrial diseases, speaking and gathered in the same place. These comments went unanswered. 1997 ended with another Invitation to visit Paris by Professor Arnold Munnich, this meeting took place in January 1998, which included further French families and the whole Genetic & Metabolic research group of the Paris Children’s Hospital. The aim of the meeting was to advise the French families how to start their group. The French Mitochondrial Disease Support Group was formed in Sept. 1998. |
July 1998, Paul had formed with the French, Belgian, Danish, German, Austrian, Czech’s, Americans, Irish, Russian’s, Spanish, Italian’s a consortium and Network of advisors and contacts to be known as The European Mitochondrial Disease Network, with the official working name of The Children’s Mitochondrial Disease Network. Further meetings took place around the UK and the Charity was launched with Guest of Honor & Patron John Savident, who has been inspirational to Paul & Trustees with ideas, support and constructive advice. John: A very much a hands on person, attending meetings and interviews when filming and personal commitments allow. John remains a true friend and supporter of the Mitochondrial Disease Network EMDN. November 1999, saw perhaps the pinnacle for Paul and his ongoing work with his colleagues and his UK President: Professor Tony Schapira, Chairman & Head of Neurosciences, Royal Free Hospital School of Medicine, London. After many years communicating via Email since 1994, setting up a basic web page of mitochondrial disease explanations, allowing a route of contact, for whom chooses to use it. The European Mitochondrial Disease Network & Paul as Hon. Director / Chairman were Invited to attend & open the first Russian Mitochondrial Disease Conference and meeting at the Moscow Institute of Paediatrics & Children’s Surgery. The meeting lasted 5 days, with enormous discussions. Prof. Vladimir Sukhorukov was Paul’s family host and personal guide & escort. The trip was thought provoking the dedication of the doctor’s, staff and nurses was incredible, many having been paid no salary for up to 12 months under a poor state system, which one day will reform for the better. “Staying with Vladimir and his lovely family was an experience I will never forget, I’m just humbled to have been offered such an opportunity, which can only improve East & West researchers to communicate for the better of Mitochondrial Disease”. Paul Preston Paul along with his colleagues & trustees continues to work for mitochondrial disease. Raising, awareness and the hope that one day, a possible effective treatment may be forthcoming. Paul is also father of 5 children of which 3 have Mitochondrial Disease in some form. Kristen, who has been mentioned additionally, Stacey & Kieran, both are gastrostomy tube-fed and disabled, with disorders that are difficult to treat and manage, with little hope of a cure. Kelly & Stephanie are the eldest and his little nursing assistants aged 12 & 9 yrs. With your support, perhaps one day this may be possible. The Children’s Mitochondrial Disease Network “EMDN” are members of the British Inherited Metabolic Disease Group, Society for the Study of Inborn Errors of Metabolism, Genetic Interest Group, Long-Term Medical Conditions Alliance, Disability Alliance, Cheshire Disability Network, Cheshire’s Carers Centre, Mitochondrial Research Society, Mitochondrial Interest Group, Metabolic Online Network. Met-lab, UMDF, Fatty Oxidation Disorders Network. Russian, French & Irish Family Support Groups. EMDN - Trustees www.emdn-mitonet.co.uk |