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25th October 2013
TREAT-NMD Alliance Conference begins on Wednesday!

Our third conference will open on Wednesday 30 October in Newcastle, UK.

The registration desk will open at 9:00am in the reception area of Life Conference and Banqueting Centre to welcome delegates. Lunch will be served from 12:00 noon.

The conference itself begins at 1:00pm in the Scotswood Suite when Hanns Lochmüller will welcome everyone to Newcastle.

The conference is split in to three main sessions. The first one looks at the 'Scientific results and achievements of TREAT-NMD related research' and will be chaired by Eric Hoffman (Children's National Medical Center, USA) and Annemieke Aartsma-Rus (Leiden University Medical Centre, Netherlands).

Anna Ambrosini (Fondazione Telethon, Italy) chairs the patient focussed session which follows on Thursday 31 October. Part of this session will concentrate on 'Advocacy, expectations and hype: improving the communication of clinical results in NMDs' a topic we expect to generate a lively and indepth discussion.

The final session 'Upcoming new themes of collaborative research' looks to the future and touches upon latest research and therapies relevant to neuromuscular stakeholders. This session will be chaired by Ichizo Nishino (National Institute of Neuroscience, National Center for Neurology and Psychiatry in Japan) and Kevin Flanigan (Ohio State University, USA).

A number of podium discussions have been scheduled into the programme to allow for audience debate. Further details of the conference can be found on the website.

Alternatively we will be reporting via twitter @TREAT_NMD #TNMD13

Myotubular and Centronuclear Myopathy Patient Registry
now available in five languages!
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We are delighted to announce that the Myotubular and Centronuclear Myopathy Patient Registry is now available in five different languages. This international registry is managed from the UK and operated by the Myotubular Trust.

This work has been undertaken as a result of the feedback from experts who attended the ENMC workshop on Centronuclear Myopathies held in May 2013 in Naarden, Netherlands. The Myotubular Trust has not only translated the registry questionnaire into French, German, Spanish and Italian but the whole registry website, in order to make this an 'equal access' registry for everyone who speaks these languages, as well as the original English. This is a wonderful achievement and a massively valuable resource for the Myotubular community around the world.

For further information about the registry and also Myotubular and Centronuclear Myopathy (in five different languages!) please visit the registry website.

Curators - update your registry information!
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The registry section on the TREAT-NMD website is currently being updated and will be launched shortly.

Our website attracts 250,000 page hits from over 70,000 unique visitors per year with the registry pages accounting for a large number of these. It is very important that patients who are wanting to join a registry can find the correct information with the minimum of effort. With this in mind we need to ensure information about national and international registries is regularly kept up-to-date. We would encourage all registry curators to have a look at the pages devoted to their registry on the TREAT-NMD website to check if the information is correct.

If you wish the information about your registry shown to be updated please complete the form by following this link.

Myotubular Trust announces sixth call to grant funding application
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The Myotubular Trust are looking to fund projects that will help find a cure and / or a treatment for any of the three types of myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources.

The Trust will be looking for the following types of application:

-  A project grant applied for by a Principal Investigator to fund a project for 2-3 years duration to be carried out by a Post Doctoral researcher, or PhD student

-  A Myotubular Trust fellowship – basic science (3-4 years duration), where the scientist has identified a group that he or she wants to work with. Award is made to a named individual

The application of new technologies to research into myotubular myopathy, which may involve collaboration between different medical disciplines and / or different research institutions is particularly encouraged. Consideration will also be given to applications which involve joint funding with other organisations.

Please note: This call will be open to research bodies internationally.

Further information about this opportunity can be found on the Myotubular Trust website. Closing date for applications is 17 January 2014.

Report from International Myotonic Dystrophy Consortium
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The International Myotonic Dystrophy Consortium (IDMC-9) meeting was held 16-19 October 2013 in San Sebastian, Spain.

The most recent developments on the diagnosis, treatment and care of myotonic dystrophy were presented and discussed during the IDMC-9 meeting in San Sebastian. Around 200 clinicians, researchers and advocacy group members were present to hear the 60 platform presentations and view the 90 posters on display over the three day event.

The scientific sessions focussed on the progress of sequencing repeats and finding new treatments for myotonic dystrophy, including antisense oligonucleotides, but also small molecules that may reduce the RNA toxicity or avoid the consequences of splicing errors associated with the disease. A number of clinical studies showed the benefits of exercise and the impact of cognitive involvement. A social, ethical and legal session highlighted the need for an integrated care approach with all health professionals needing to contribute to the care of this multisystemic condition. TREAT-NMD was represented through its registry efforts and the role in OPTIMISTIC, a European trial to explore the effect of cognitive behavioural therapy in combination with exercise. (www.optimistic-dm.eu).

The last day of the meeting was attended by patients from across the world and overviews of the previous sessions were presented. A tribute was paid to Shannon Lord who worked tirelessly as an advocate for people with the condition, being instrumental in the creation of the Myotonic Dystrophy Foundation in the United States (www.myotonic.org).

A satellite meeting of the “Outcome measures in myotonic dystrophy type 1” (OMMYD-2) working group also took place, where special interest groups met hoping to make progress in defining the best outcome measures needed to not only improve clinical follow up but also to ensure accurate outcomes of clinical trials.

More information can be found on the conference website: www.IDMC-9.org

NMR lab project manager at the Institut de Myologie required
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A lab project manager is required for a 3-year position based at the Institut de Myologie, Pitié-Salpêtrière University Hospital, Paris, France. The main responsibilities of the role are to organize the clinical research protocols at the NMR laboratory and coordinate NMR activities between FP7 project partners.

Download this PDF for further details.

Applicants should submit a CV, a description of scientific career, list of publications and documentation of successful third-party funding and teaching to: p.carlier@institut-myologie.org and j.vandenheede@institut-myologie.org

Closing date for applications is 15 November 2013.

Important date reminders for Myocon 2014 conference
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The second Myocon International Conference on Neuromuscular Diseases will take place in Chennai, India, 10-12 January 2014.

The conference will consist of a mixture of lectures, case presentations, paper presentations and discussions along with a dedicated session for parents.

The main goal of the conference is to provide a unique forum for interdisciplinary education and to inspire a creative translational exchange between clinical and preclincal scientists.

Poster abstracts for this conference should be submitted before 31 October with registration closing on 31 December 2013. Further conference details can be found in the conference brochure and the registration form is also available for download.

TREAT-NMD Alliance Conference
Past newsletters
25th October 2013
TREAT-NMD newsletter - 25th October 2013
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