Meeting of the Foundation’s regulatory bodies



Written on Friday 28 June 2013

Meeting of the Scientific Committee

The 14th meeting of the ELA Foundation Scientific Committee was held by teleconference on the 26th of February. To continue to support scientific and medical research into leukodystrophies, particularly young researchers’ work, the members of the Scientific Committee decided that they hoped that the Foundation could provide PhD funding in 2013.

The Scientific Committee evaluated the progress of the ongoing projects that were up for renewal during the first semester of 2013. A review was also carried out concerning the current PUSH projects. Just as a reminder, these projects, of which there are five, aim to address the missing links of research into leukodystrophies (indeterminate leukodystrophies, myelin repair, training of young clinicians, clinical trials using anti-oxydants for adrenomyeloneuropathy and diagnosis of leukodystrophies).

The next scientific congress of the ELA Foundation should be organized in Nancy in 2014 and will celebrate the launching of the ELA biobank. The members of the Scientific Committee will work on the elaboration of its program.
At the initiative of David Rowitch, a member of the Scientific Committee, a working group to discuss MRI imaging techniques and the measures of their efficacy for clinical trials was proposed for October 2013. The next meeting of the Scientific Committee was fixed for Monday October 14th 2013.

Meeting of the Steering Committee

The members of the ELA Foundation steering committee met on March 21st in Paris. They evaluated the proposal of the Scientific Committee to fund PhD grants in 2013. They proposed that the Board of Trustees should reply favourably to this suggestion, but should dedicate these grants exclusively to thesis students in their last year of study and restrict financing to one year maximum. Furthermore, members of the Scientific Committee should not be able to apply for such funding.
The members of the steering committee also approved the project renewal proposals of the Scientific Committee. Furthermore, an update of the PUSH projects was carried out: it was agreed that the one concerning the training of young clinicians should be revised and simplified. The Scientific Committee will be asked to establish the training program. The next meeting of the steering committee will take place on October 28th 2013.

Meeting of the Board of Trustees

On the 20th of June, the Board of Trustees carried out a full audit of the 2012 accounts of the ELA Foundation and approved the provisional 2013 budget. It validated the proposal for a call to tender in 2013 directed uniquely at the financing of thesis grants and delivered its opinion on the 2013 research financing. This Council was the occasion to take stock of the state of advancement of the clinical database associated with sample storage and of the development of the world-wide patient network. The next meeting of the Board of Trustees will be held on November 27th.