The TREAT-NMD Alliance: Current and Future Plans for 2012 and Beyond

Final Governing Board Attendees

In the last newsletter of 2011, we talked about how collaboration and networking over the last five years has supported the various activities of TREAT-NMD. With the formation of the TREAT-NMD Alliance, it is hoped that this collaborative approach will continue. This will be coordinated by a 12 member Executive Committee with 9 academic members (scientists and clinicians) and 3 members from patient organisations. So far, elections have been held for the academic members of the Executive Committee and out of 21 nominees, the following nine people have been elected:

  • Annemieke Aartsma-Rus (Leiden University Medical Centre, NL)
  • Kevin Flanigan (Nationwide Children’s Hospital, Ohio, USA)
  • Eric Hoffman (Children’s National Medical Centre, Washington DC, USA)
  • Jan Kirschner (University Medical Centre Freiburg, Germany)
  • Hanns Lochmuller (Newcastle University, UK)
  • Eugenio Mercuri (Catholic University, Rome, Italy)
  • Ichizo Nishino (National Centre of Neurology and Psychiatry, Japan)
  • Kathy North (University of Sydney, Australia)
  • Thomas Sejersen (Karolinska Institute, Sweden)

On behalf of the TREAT-NMD Alliance, we would like to acknowledge the help and support from the academic Task Force who elected the academic members of the Executive Committee. Currently, the elections for the patient organisation members of the Executive Committee are ongoing with 17 nominations from patient organisations around the world, and we look forward to informing you of the outcome of this election in our next newsletter on the 29th February (which is also Rare Disease Day!).

Following the patient organisation election the first full 12-member Executive Committee, who will be tasked with providing ongoing oversight and leadership to the TREAT-NMD Alliance, will work with our many collaborators and supporters to continue the activities of TREAT-NMD. Newcastle University has committed to providing ongoing secretariat support to the Executive Committee and the TREAT-NMD Alliance and we will continue to provide updates on progress via the TREAT-NMD newsletter.

The first duties for the new Executive Committee will be to revise and approve the current versions of the Members’ Charter, as well as the charter that describes the new governance and oversight structure for the TREAT-NMD Alliance. From 2007 to the end of 2011, leadership of TREAT-NMD was provided through the Governing Board that consisted of representatives from the organisations who received funding from the European Commission via the FP6 grant. The new Executive Committee will define the TREAT-NMD Alliance governance model as well as any advisory or sub-committees necessary to help ensure the Alliance is properly managed from 2012 onwards.

The TREAT-NMD web site and newsletter will continue to provide ongoing information on the activities of the Alliance and the Executive Committee. The Executive Committee look forward to working with you all on developing the TREAT-NMD Alliance and our continuing collaboration!

 
25 Jan 2012