Myotubular Trust

Myotubular Trust is a charity registered with the Charity Commission for England and Wales (charity number 1137177).

Two parents of children affected by myotubular myopathy set up the Myotubular Trust in February, because research into the rare condition could lag behind developments in other fields of muscle disease without dedicated funds. Its purpose is the relief of disability and the extension of life for those suffering from myotubular myopathy, through research into its treatment and cure. In 19 years it has raised in excess of £3.1M and funded 19 major research grants internationally, and its annual giving was £248,836 according to the annual report. From its first grant awards it has invested each year in research for centronuclear myopathy as well as the more common x-linked myotubular myopathy.

Priority Areas

The Trust funds medical research intended to advance treatments and ultimately find a cure for myotubular and centronuclear myopathy. It seeks a diverse range of routes to a cure across all genetic forms of these conditions, and also supports research into treatments that alleviate the most severe symptoms. Its approach is to invest in translational research, peer reviewed to high international standards and supported by a Scientific Advisory Board. It makes grants to organisations and individuals and describes its ambition to be a source of funds for international researchers, including for proof-of-principle research projects not normally supported by public or industrial funding. Alongside research, it provides support and information to families affected by the conditions.

Themes

• Myotubular and centronuclear research

Geographic Focus

Global; the UK.

For its joint GOSH research call, GOSH Charity invites project-grant applications from researchers across the UK, while the Trust participates as a rare-disease partner.

Deadlines: Outline applications are subject to a closing deadline.

Application windows:

• Joint Research Call with Great Ormond Street Hospital Charity (GOSH): Outline applications close on July 16 at 3 PM.

What the charity says:

• The call seeks applications that advance the search for a cure or treatment for genetic forms of centronuclear and myotubular myopathy, or increase understanding of liver abnormalities in the condition.
• Projects must improve understanding of the disease or associated conditions, or improve outcomes for affected children.
• Applicants must articulate a route to clinical application or potential patient benefit.