Patient care is at the heart of our approach to research funding
From the outset, when we began our fundraising to support work at The University of Cambridge, our focus was on developing better treatments and a cure. We wanted to help support any research that might positively affect Archie’s quality of life, and prognosis.
We heard about the research at Cambridge by chance. Jamie’s father was listening to a BBC radio interview with Professor Nick Morell (BHF Professor of Cardiopulmonary Medicine and Research Director at the National Pulmonary Hypertension Service), whose lab was pioneering stem cell research in patients with pulmonary arterial hypertension. Jamie got straight on the phone to Cambridge, asking to be put through to the lab. “Miraculously,” says Jamie, “Professor Morell picked up. We had a long conversation and I said: I want to fund your research, and I’m going to find a way to do it.”
That was the inspiration for the first fundraiser we organized. When we planned our first event, an auction at Daylesford in the Cotswolds, we set out to raise 100k towards the Cambridge research into Morell’s BMPR2 project. We were astonished to hit the target three times over. The most bid-on lot in the auction was a dinosaur drawing of Archie’s, which provided the inspiration for the name of our charity.
Since then we’ve gone on to fund a number of other research projects at a range of different institutions.
Read on to find out more about some of the past projects we have been involved with:
BMPR2 with Nick Morell at Cambridge University
Our first round of funding allowed Professor Nick Morrell and his team to further explore the BMPR2 gene in relation to PAH.
We followed up our first investment with a second round of funding for Professor Morell’s BMPR2 project. This work was carried out by Dr Amer Rana and PHD student Emily in Professor Morell’s laboratory at the University of Cambridge and has led to new discoveries and further understanding of the BMPR2 gene mutation. This research will speed up the process of the Cambridge team finding better treatments for PAH, and hopefully a cure.
Through the first two phases of support for the work at Cambridge, it became apparent that the BMPR2 research would benefit from funding a bioinformatician whose job it was to gather and collate data sets from global cohorts of patients to bring better understanding of the mechanisms and groups and subgroups within pulmonary hypertension which was absolutely vital in understanding the genetic side of pulmonary hypertension. We provided Cambridge with a grant of £148,568 funding to support this post for two years.
Great Ormond Street Hospital, Research Nurse & Research Assistant posts
After raising our first round of funds, we approached Dr Shahin Moledina, head of the PH department at GOSH, asking how we could best help patients access to the latest stem cell and genetic research taking place at Cambridge University, and how we could accelerate and improve the PH service at GOSH.
He suggested The Dinosaur Trust could fund a Research Nurse post, explaining that this role could help improve access to clinical trials and treatments in development for patients, as well as providing a bridge between patients and scientists.
We’ve now committed to six years of salary for this vital research nurse and have gone on to fund a Research Assistant role at Great Ormond Street Hospital as well. Together, these two specialists are helping to accelerate treatment options for families like ours.
Read more about our partnership with Great Ormond Street Hospital
Xcelligence – Imperial College, London
Xcelligence is an amazing piece of equipment that allows scientists to observe the effects on cells in real time and also allows scientists to test compounds and see how cells respond and react.
It’s an incredibly valuable and useful piece of equipment for scientists to research cells. After funding the equipment, we supported work by scientists at Imperial College to better understand the BMPR2 gene mutation.
Selected Research Projects with the PVRI
The focus: further studies into BMPR2
To date, our primary focus has been around the genetic mutation that is believed to cause idiopathic pulmonary hypertension and therefore most of the research work we have funded has been associated with the genetic form of idiopathic pulmonary hypertension. Having said that, any research into the disease has wider implications, helping scientists and clinicians better understand the causes of PH more broadly, and how to treat it.
EXAMPLE PROJECT BMPR2 – Hyung Chun, Yale University, USA
Researchers have focused on disease mechanisms involved in pulmonary arterial hypertension, and the function of the BMPR2 gene. As part of the research at Yale, the team has identified a new function for BMPR2, where it serves as a key sensor of blood flow by the cells lining the blood vessel. This may be a key role for BMPR2, and disruption of this role may play an important role in development of PAH in humans. Researchers are also exploring the way the right side of the heart responds to the increased blood pressure in the lungs, as most patients with PAH will suffer from right heart failure leading to poor disease outcomes.