rare diseases children project

Children’s charities announce £2 million cash injection into child health research including Oxford-based project

Date: 28 February 2018

An Oxford researcher has received further funding for research into a children’s condition that causes jerky movements of the child’s eyes and body, unsteadiness on their feet, irritability and sleeping problems.

Oxford University Hospital NHS Foundation Trust’s Dr Ming Lim has received funding from Great Ormond Street Hospital Children’s Charity and Sparks, the medical research charity to fund research into the advancement of treatment in to Opsoclonus Myoclonus Syndrome, otherwise known as Dancing Eye Syndrome.

Researchers from across the UK were invited to apply for funding as part of a £2.1 million investment by the two charities - the largest charitable funding call dedicated to child health research in the UK - which was announced to mark Rare Disease Day. The study is being delivered in the UK with support from the National Institute for Health Research (NIHR).

This National Call reflects GOSH Charity and Sparks’ ambitions to help find treatments and cures for seriously ill children with rare and complex conditions.

Dr Ming Lim and his team form the UK arm of a Europe-wide study of children with Dancing Eye Syndrome. The study aims to determine the most effective course of treatment for these patients. The study is already underway, and patients have been recruited from 14 countries around Europe. Now, Dr Lim and his team want to recruit even more children from the UK, to boost the volume of valuable data available to the study.

By recruiting more patients with Dancing Eye Syndrome from the UK, Dr Lim’s team will help push the European study closer towards its target of 100 patients. This will enable the team to determine the most effective treatment for the condition more quickly, reducing any delay in children being given the treatment most likely to help them. This could allow more children with dancing eye syndrome to avoid the debilitating effects of their condition and vastly improve their health and quality of life.

Dr Ming Lim said: “I am delighted to have received funding from GOSH Charity and Sparks which will enable me to further my work in research for children with Opsoclonus Myoclonus Syndrome, a rare condition where a cancer, or infection, triggers the immune system to attack the brain . It’s fantastic to know that these two charities are making such a large amount available for child health researchers across the UK to bid for each year.”

The £2.1 million is funding 13 more researchers at 10 different Institutions across the UK from Plymouth to Liverpool, looking at treatments for a range of diseases such as stem cell therapy for Duchenne Muscular Dystrophy, immunotherapy treatment for brain tumours, new treatments for children with a type of motor neuron disease, and diagnostic techniques for cerebral palsy.

These projects reflect the ambition of the charities to enable new treatments to be taken from the lab bench to the patient’s bedside, speeding up the diagnosis and treatment of complex conditions.

Tim Johnson, Chief Executive of Chief Executive of Great Ormond Street Hospital Children’s Charity and Sparks says: “For many seriously ill children, research is their only hope, yet paediatric research is severely underfunded, receiving only five per cent of public and charitable funding research in the UK each year.

By making more money available to researchers from across the country we will help them to find new ways to diagnose, treat and cure complex diseases that affect children.”

Kiki Syrad, Director of Grants and Impact at Great Ormond Street Hospital Children’s Charity says: “The invitation to researchers to apply for funding received a huge response from the paediatric research community. We look forward to seeing how Dr Ming Ling’s project progresses, and the call re-opening later this year.” 

For further information, please contact Ruth Maurice in the Great Ormond Street Hospital Children’s Charity Press Office on 020 7239 3125.

  • Summary:
    An Oxford researcher has received further funding for research into a children’s condition that causes jerky movements of the child’s eyes and body, unsteadiness on their feet, irritability and sleeping problems.
  • Include on homepage (one at a time):
  • Areas of the site this news is applicable to:
  • LCRN:
    Thames Valley and South Midlands
  • Year of publication:
  • Specialty:
    • Children
    • Ophthalmology
    • Genetics
  • News filter:
    NIHR in your area

You may also be interested in