Why we created The Dinosaur Trust charity to raise funds to fund a cure for Pulmonary arterial hypertension.
Our Story
We were living in Chamonix, France, when Archie, our then 2-year-old son, was diagnosed in hospital with idiopathic pulmonary arterial hypertension (PAH), just ten days before his sister Maya was born.
Doctors told us Archie may or may not respond to treatment and, if he didn’t, the prognosis of life expectancy was around four years. We were utterly devastated and in total shock.
We nearly lost him twice in those early years but he was saved through pioneering surgery at Great Ormond Street Hospital (GOSH).
The Potts Shunt surgery for Archie was so successful that he currently has a good quality of life. He loves taekwondo competitions, singing and dancing to Michael Jackson. Other than being short of pace compared to his friends, you wouldn’t know that Archie lives with PAH.
Our moment of resolve arrived just before Archie went into GOSH for his operation. We decided that we were going to do whatever it took to seek a cure through medical research, regardless of the surgical outcome. We would create a legacy for Archie and a broader purpose for his fight whether he survived or not.
Why are we called The Dinosaur Trust?
In 2013, we organised an auction at Daylesford Farm in the Cotswolds. One lot, a drawing of a dinosaur by Archie, was bid on like a lost Warhol.
This became the inspiration for the name of our Pulmonary arterial hypertension (PAH) research charity, The Dinosaur Trust.
At each auction, Archie produces a new dinosaur drawing which is always the highlight of the event!
Medical specialists and researchers
Over the past four years, we have built an international network of medical specialists and researchers.
We believe that by pooling vital data and centralising it, a breakthrough is possible. By sharing research material and supporting collaboration, we aim to increase the pace of discovery and innovation, moving beyond the siloed approach to research that existed in the past, which meant that scientists were working along parallel lines.
Our partnership with The PVRI
In 2016 we signed a memorandum of understanding with the Pulmonary Vascular Research Institute (PVRI). It is a global organisation of medical clinicians and researchers representing leading minds in the field.
The PVRI provides a framework into which researchers and medical expertise unify their findings and work towards a common goal.
Together with the PVRI, we have formed a scientific advisory committee to invite research applications for review and selection from within the international research community.
This is a major milestone in the formalisation of our involvement in global medical research. We could not have achieved such progress without the incredible input of world-class experts.
The Dinosaur Trust is now the largest funder of specific research into Pulmonary arterial hypertension (PAH) in the United Kingdom
Whilst charities such as the BHF support research into a host of cardiovascular diseases, we are now the largest funder of specific research into PAH in the United Kingdom.
We get invited to contribute to conferences, symposiums and round table medical events, partnering with a consortium of experts to signpost the route towards finding a cure.
Setting up this PAH research charity was prompted by a family crisis but through The Dinosaur Trust we have met many other families in a similar position to us. They face the same battle we do – whether they have children with PAH or live with it as an adult.
Our work to date fills us with confidence that together we can beat this disease.