How and why did we pick such a fight?
This fight picked us, when our son Archie was diagnosed with pulmonary hypertension. Those early years were bleak; we knew nothing, we knew nobody, we were faced with a disease that had no cure. But the battle was on.
Great Ormond Street and the Dinosaur Trust
Linking the Dinosaur Trust and Great Ormond Street
About Great Ormond Street
As our journey began, we found strength from friends and medical experts who spurred us on in an unimaginable way. Through that support we forged a belief that Idiopathic and heritable pulmonary hypertension could be beaten.
Our first instinct after Archie was diagnosed at the age of two was to ask: “How do we make him better?”
To hear that there was no known cure, just the possibility of a bilateral lung transplant, was unfathomable. To go from a seemingly healthy toddler to someone who is short of breath and side-swiped by this vicious disease changed our lives forever.
We nearly lost him twice in those early years but he was saved through pioneering surgery at Great Ormond Street Hospital. That surgery for Archie was so successful that he currently has a good quality of life. He loves taekwondo competitions, sings and dances to Michael Jackson and other than being a substantially short of pace compared to his friends, you wouldn’t know that he lives with pulmonary hypertension.
Our moment of clarity arrived just before he went into GOSH for the operation. We decided that we were going to dedicate whatever it took to seek a cure through medical research, regardless of the surgical outcome. This would be a legacy for Archie and his fight no matter if he survived or not.
Our first fundraising event was extraordinary. We had overwhelming support from family, friends, friends of friends and businesses, leading to donations far beyond our expectations.
We organised an auction at Daylesford Farm, a stunning venue in the Cotswolds. It included one lot, a drawing of a dinosaur by Archie. It was bid on like a lost Warhol. This was the inspiration for the name of our charity, The Dinosaur Trust. At each Auction, Archie produces another dinosaur drawing and this is always the highlight of the event!
For the past four years we have been networking with medical specialist and experts all around the globe. We believe the sharing of research material from all these formidable medical minds to be critically important, rather than having people work in parallel lines. Through pooling vital data and centralising it, we believe that a breakthrough is possible.
As our knowledge base grew, and as further cash was raised, we were able to fund research at Cambridge University into seeking a cure for PAH. A major milestone was reached.
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 at leading medical meetings and events, working with a consortium of experts where the round table discussions signpost the way forward to reaching a cure.
We have signed a memorandum of understanding with the PVRI (Pulmonary Vascular Research Institute). They are a global organisation of medical clinicians and researchers who represent the leading minds in the field. They provide 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 who puts out the call to the international community to send research applications for review and selection. 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 from world-class experts.
Setting up this charity was prompted by a family crisis. Through the Dinosaur Trust we have met many other families, whether they have children or adults with PAH. They face the same battle, but our work to date fills us with confidence that together we can beat this disease.
Jamie and Julia Strachan, parents of Archie and founders of The Dinosaur Trust
Jo is director of the Press Office at Chanel and sister to Jamie Strachan. Her expertise in event organisation and dare we say it, party planning, is second to none and invaluable in fundraising. She carries an unrivalled Roladex of contacts and friends.
Will is Founding Partner at Brunswick Real Estate, a market leader in Nordic property investment. He is a very close friend of Julia and Jamie and over the years an immense support of the family, giving time, friendship and counsel. His impeccable organisation skills and advice with regard to governance and best practice is enormous.
Gavin McAlpineDirector & Treasurer
As Chairman of Sir Robert McAlpine Ltd, Gavin brings a clarity of thought and decision-making to the charity. His business, due diligence and financial expertise gives us a formidable presence on the board of trustees. He is treasurer of the trust.
An entrepreneur and highly successful businessman, who built his family food business into a multi-million pound enterprise. A family friend who has supported the trust every step of the way.
First and foremost, Julia is the mother of a child who lives with PAH. Her first-hand experience of the challenges and struggles that come with caring for someone with this disease are invaluable to the trust’s understanding of what needs to be done. She also brings great business acumen, through over ten years’ of running her own company.
Jamie StrachanDirector & Chairman
Chariman of the trust and father of Archie. Jamie founded the trust, and it is his vision which has driven the direction of the charity since its inception. He loves to work with the medical researchers and binds all elements of the charity together.
Governance is key.
We have built up a formidable group of trustees, with each person bringing a priceless array of skills to the table. But perhaps even more importantly, they have a passion and belief for The Dinosaur Trust, which will only lead to great things. We are immensely proud that more than
96% of funds raised go directly into research.
We have a legal department in London, at Covington Burling, working pro-bono for us to ensure that all our agreements with research institutes are set up properly.
Pulmonary Vascular Research Institute
In 2017 we signed an MOU with the PVRI to link our two charitable organisations in the quest to find a cure for IPAH. We have formed an international medical advisory board which Jamie is a part of. This advisory board, puts out to call for research to find a cure for IPAH. We are expecting the first round of applications later in the year and the Dinosaur trust will fund the most promising research work as advised by the board.
Great Ormond Street Hospital
Like all children who have PAH in the UK, Archie was treated at Great Ormond Street hospital. GOSH is a world renowned institution dedicated to helping children with rare medical conditions. We are committed to supporting the research work done at the pulmonary hypertension department and we have funded a research nurse for three years.
Cambridge University and the laboratories of Professor nick Morrell play a vital role in the global quest to find a cure for PAH. They are focussed on the genetic form of the disease. To date we have funded two PHD’s and a research fellow.
Imperial college are working with a wider group of researchers around the world to find a cure for PAH. We have supplied them with cutting edge xcelligence equipment that allows them to conduct cell essays in real time, which speeds up research and provides more accurate readings when studying cells.