• A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM community
    About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
  • The First Cork Hope Walk
    It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
  • Fundraising For Ruben
    Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
  • The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!
    This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
  • Pretty Muddy Race For Life 2019
    Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]

Call For Grants

Joint Research Call With The World Renowned Great Ormond Street Hospital Charity, and Sparks (2019/20)

Great Ormond Street Hospital Charity and Sparks have announced a national funding call in child health research. Under this funding call up to £2M is available to support project grants from researchers across the UK. The emphasis of this call is on complex childhood illness, including rare diseases and we are delighted to announce that this year again, they have partnered with 5 rare disease charities, including Myotubular Trust. Therefore, within this call they are specifically asking for applications that aim to significantly advance the search to find a cure and/or a treatment for any of the genetic forms of centronuclear and myotubular myopathy.

All projects must aim to improve understanding and/or outcomes for the child and have the potential to lead to the development of new diagnostic tools and novel interventions. Proposals will be asked to articulate a clear route to clinical application and strong partnership between clinical and laboratory- based research.

Read more details here: GOSH Charity and Sparks Call for Applications 2019_2020 & FAQ. The deadline for submission of outline applications is 4pm on Thursday 25 July 2019. This funding call particularly encourages applications from early career researchers and those who are still consolidating their independent research careers. They welcome international collaboration and co-operation too.

We are proud to be part of a partnership with these two organisations who have done so much to further the health of children, and we thank all our donors and fundraisers who make it possible for us to be part of such a partnership.







Myotubular Trust Grants Information 2019

The Myotubular Trust (Registered Charity No: 1137177) was set up in 2006 to raise money for research to find a cure and / or treatment for myotubular myopathy.

The Myotubular Trust has a Scientific Advisory Board (SAB), chaired by Professor Francesco Muntoni of The Institute of Child Health, University College London. The SAB makes recommendations to the Myotubular Trust Trustees on which projects to fund based on scientific merit and peer review.

We are delighted to announce our 2019 call for grants.

As before, we are looking to fund further projects that will help find a cure and / or a treatment for any form of centronuclear and 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. This call will be open to international applications.

Applications may be made for:

1. Project grants
We will consider applications from the Principal Investigator for projects of 2-3 years duration to be carried out by a Post-Doctoral researcher, or PHD student

2. A Myotubular Trust fellowship, non-clinical
Applicants will have identified a host institution and will be undertaking a basic science project of 3-4 years duration

In particular we would like to encourage the application of new technologies to research into centronuclear and myotubular myopathy; interventional trials; and those which may involve collaboration between different medical disciplines and / or different research institutions. We are also willing to consider applications which involve joint funding of new projects with other organisations.

We will require completed applications by 1700 hours GMT Friday 15th March 2019. We anticipate making awards in late June / early July.

Application Forms

Please download an application form here:

Myotubular Trust Project Grant Application 2019 (DOC)

Myotubular Trust Fellowship Application 2019 (DOC)

Our Funded Projects

Over the years, we have awarded research grants / fellowships for the following projects:

Gene therapy for x-linked myotubular myopathy and pathophysiology – Dr Ana Buj Bello, Genethon, Evry, France – £102,290 over 2 years

Membrane trafficking and T tubule structure and function in a canine model of centronuclear myopathies – Dr Richard Piercy, Royal Veterinary College, London – £38,548 over 3 years

Deciphering the molecular pathway involving centronuclear myopathy genes – Manuela D’Alessandro, IGBMC, Illkirch, France – £120,000 over 3 years

Gene therapy for autosomal dominant centronuclear myopathy by Transplicing – Dr Marc Bitoun, INSERM, Paris – £102,340 over 2 years

Next generation sequencing to tackle centronuclear myopathies – Dr Jocelyn Laporte, IGBMC, France – £62,000 over 2 years

Secondary pathogenic mechanisms in XLMTM and CNM – Dr Susan Treves, Basel University Hospital, Basel, Switzerland and Professor Heinz Jungbluth, King’s College London – £116,664 over 3 years

Pre-clinical gene replacement therapy for X-linked myotubular myopathy (MTM1) – Dr Anna Buj Bello, Genethon, Evry, France – £110,300 over 2 years

Reducing DNM2 as a novel therapeutic target for centronuclear myopathy – Dr Jocelyn Laporte, IGBMC, France – £132,000 over 3 years

PI3 Kinase inhibition as a novel treatment strategy for myotubular myopathy (MTM1) – Dr James Dowling, Hospital for Sick Children, Toronto, Canada – £102,500 over 2 years

Myotubular and Centronuclear Myopathy Patient Registry curation – Professor Hanns Lochmueller, TREAT-NMD, John Walton Muscular Dystrophy Research Centre, Newcastle University – £60,744 over 2 years

Combinatorial therapy as a novel treatment strategy for myotubular myopathy (MTM1) – Dr James Dowling, Hospital for Sick Children, Toronto, Canada – £216,000 over 3 years

The Research Process

Please feel free to download the pdf explaining more about the Myotubular Trust’s research selection process.

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