2017 review

  • Executive Committee Chair
  • Kevin Flanigan
    Kevin Flanigan
    Dr. Kevin Flanigan is a Professor of Neurology and Pediatrics at the Ohio State University,...

Dear Readers,

As this is the last Newsletter of 2017, it gives us a good opportunity to review the year, and look at some of our highlights.

2017 marked an important Milestone for TREAT-NMD, as this was the 10 year anniversary since the start of TREAT-NMD.  We started in 2007 with funding from the European Union Framework Program (FP).  The initial partners included academics, patient organisations, and companies.

The original funding ended in 2011, but an awareness for the need for such a vital network, with the tools and platforms that had been developed, and the motivation in the field, meant that TREAT-NMD continued to exist, and indeed grow, with the backing of various funding streams under the term ‘TREAT-NMD Alliance’.  In 2012 the Alliance was established with a wider global remit, and a wider disease spectrum.

The aim of the initial network was to ‘reshape the NMD research environment’, which was very much achieved and continues to be built and improved.  The resources developed have been heavily utilized by both academia and industry.

The network and its resources, now supports all stages of therapy development and aims to improve the health and quality of life of people around the world with a wide variety of NMDs.

As is customary in an end of year review I would like to celebrate some of our achievements.

Since October 2016, TREAT-NMD have helped to organise nine different international meetings around the world, including an Outcomes Measures Workshop in January 2017, a DMD Masterclass in May 2017 and Of Mice and Measures in October 2017.  The TREAT-NMD Secretariat has also attended a number of international clinical and or scientific meetings in the past year where posters and presentations have been exhibited.  Particular highlights being the PPMD Meeting in July 2017 (TREAT-NMD and TACT posters) and at WMS in October 2017 where the Registries poster was presented.

Our ever increasing interactions with Industry mean we are now working with over 16 different companies!

We have been very successful in being involved in grants from a number of different funders for example IMI2- PREFER, and also a number of Educational Grants from different companies.

In line with our ten year anniversary we are very proud of our publication as a review article “Translational Research in Europe for the Assessment and Treatment for Neuromuscular Disorders (TREAT-NMD)”, the publication of the Family Guides for DMD and SMA and also for our pioneering work on helping to develop a NMD Post Marketing Platform.

We have undertaken four registry enquiries this year all on DMD and have a further five enquiries in the pipeline. There have been two TACT Meetings in 2017, one in Edinburgh, Scotland in April and the other in Montreal, Canada in October.  Five out of six applications were from academics and all six were in DMD. New members have been recruited to the extended panel this year and we are delighted to announce that from October 2018, Annamaria de Luca will take over as TACT Chair after 3 years of Kathryn Wagner’s expert leadership.  Kathryn a big thank you from us all!

With this in mind, it is important to keep developing and growing the network.  Our aim is to continually reach out to new members.  We currently have 420 members and would like to set a target to make that number 1000 by the time of our next conference in 2019.

To achieve this, we need your help!  Help us raise awareness of the network and encourage people to become members.  We will very soon be deciding where to hold our next conference, and as a member, you could help us to decide on the venue! Towards the close of this year, we had a really successful and informative conference in Freiburg in November.  It was attended by approximately 300 people. We received lots of positive feedback from this conference, with an appreciation for the diversity of topics and areas covered.  If you haven’t attended one of our conferences before, may be our next one could be the one for you!

I will also take this opportunity to thank the past and present members of the Executive Committee. I would also like to thank the Secretariat in Newcastle for their work in supporting the Executive, TACT and TGDOC committees. Finally, I also want to thank all of you for being part of TREAT-NMD and want to stress that you can be involved in many ways. There is a lot of work still to be done and we need your help to prepare the neuromuscular field for the future.

Wishing you all a wonderful Christmas and a Happy New Year.

On behalf of Kevin Flanigan

TREAT-NMD Chair

 
20 Dec 2017