Jackpot: Foundation chairman Alan Peaford celebrates the Lottery grant from the Community Fund.

The research project into the rogue gene that causes CdLS has been saved thanks to the support of the Community Fund.

The Community Fund is responsible for allocating lottery money to deserving causes and announced this month that the joint partnership application between the UK Foundation and the Institute of Human Genetics at Newcastle University has been successful in the bid for £145,000 of lottery money.

Professor Tom Strachan, who has been leading the Newcastle investigation for the past five years said the team was “highly delighted and greatly relieved.”

Funds

Funding from the Medical Research Council ceased last year and Professor Strachan had warned the Foundation that the University would be unable to continue the research if there were no more funds available.

Funding for research in the USA had also been cut.

Talking to families at the Chester conference Professor Strachan said that it would be a great tragedy if the project was halted as he believed the team are close to breakthrough.

CdLS Foundation chairman Alan Peaford lobbied Health Minister Yvette Cooper about the lack of funding for the research.

Research

Other research grant bodies were running out of cash and then late last year the Community Fund announced a new round of grants for research projects where the scientists work closely with the families and people who will benefit directly from the results of the research.

“It was like a godsend,” Alan Peaford said. “We applied and received a 74-page grant application form.

“The Newcastle team and ourselves worked like mad to complete the details in the timescale to get in the first-round of grants.

“We had references from SAC members in the USA and professionals like Graham Chinn, (the independent financial advisor) all spoke up for us.

“Tom was convinced he could keep the project going until Christmas. We had to undergo extensive interviews and then knew we had to wait until March. Time was running out.

If there had been a delay then the next stage of the project would not have been able to happen.

“Then I took the call from the Community Fund in the office and they said, ‘It’s good news – congratulations’. I’m afraid I whooped with joy and then had the pleasure of calling Tom and his team at Newcastle. It is fabulous news.”

Developments

As part of the agreement, the Newcastle team will continue to keep the Foundation and its members informed of developments as they happen, rather than waiting for publishing in medical circles.

Professor Strachan said, “We have worked well with the Foundation in the past and look forward to doing so again. We know how much time and effort the families have put into helping with this research.”

The new stage of the research will begin immediately.