Brunel University London’s Dr Victor Hernandez Hernandez has been awarded £220,191 from Great Ormond Street Hospital Children’s Charity and Sparks, the children’s medical research charity, to fund his research into the advancement of treatment for Bardet Biedl Syndrome, a rare genetic disorder that leads to blindness, learning disabilities and weight gain. There is currently no cure.
This is part of a £2.3 million investment into child health research projects across the UK led by the two charities - the largest annual charitable call dedicated to funding research into child health conditions, and announced to coincide with national Rare Disease Day on the 29 February.
Dr Victor Hernandez Hernandez’s project will investigate whether gene therapy to both the eyes and the brain, could correct the genetic mistake that causes the condition, alleviating the most serious and life-changing symptoms in one go.
Dr. Victor Hernandez Hernandez, Lecturer at Brunel University London says, “I am delighted to have received funding from GOSH Charity and Sparks which will enable us to further our research to help children with Bardet-Biedl Syndrome. It’s fantastic to know that these charities are making such a large amount available for child health researchers across the UK to bid for each year.”
Kiki Syrad, Director of Grants and Impact at GOSH Charity and Sparks charity, said: “Year on year we are amazed by the quality and diversity of applications we receive from researchers across the UK, like Dr Victor Hernandez Hernandez and the life-changing potential their projects have.
“The projects we have chosen to fund this year reflect the ambition of both GOSH Charity and Sparks to drive new tests and treatments from the lab bench to the patient’s bedside. Seriously ill children urgently need new options and our aim is to fund research projects that will ultimately help speed up the diagnosis of rare and complex conditions, or create a step-change in the treatment options available.”
Of the £2.3 million investment, £182,926 has been pledged by thee condition-specific charities (the Norrie Disease Foundation, Dravet Syndrome UK, and the Myotubular Trust) to help co-fund research into these diseases. This injection of funds will provide a huge boost as paediatric research is severely underfunded, receiving only five per cent of public and charitable research funding in the UK each year1.
Other projects to receive funding include research that aims to unravel the drivers of aggressive childhood brain tumours; the UK arm of a clinical trial to assess whether a breast cancer drug could help children with a rare and debilitating muscle disorder; and the development of an implantable and removable liver ‘patch’ that could hold the key to reducing toxic chemical levels in the blood of children with a rare metabolic conditions,
The commitment to paediatric research funding reflects GOSH Charity and Sparks’ ambitions to help unlock breakthroughs in children’s medicines that will find treatments and cures for seriously ill children with rare and complex conditions.
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