The Myotubular Trust is a charity founded by two mothers - Wendy Hughes and Anne Lennox - whose sons were affected by the rare and devastating muscle condition myotubular myopathy. Rare diseases find it impossible to raise research funds and Wendy and Anne realised that if a cure for their sons condition was to keep pace with medical advances, the only route was to set up a dedicated charity.
To date we have raised over £900,000 - mainly through fundraising led by families, their friends and extended networks. These networks have very helpfully included many corporate organisations - both employers and professional contacts - who have not only fundraised for the Myotubular Trust, but provided pro bono support services and time.
We have set up a world class peer review process and have funded 5 substantial research projects, the early results of which are both promising and exciting, especially in the field of gene therapy. We continue to fundraise to bring forward the day when a cure or treatment can be found, giving boys born today with myotubular myopathy a real chance of life.
Company Details
- Employees
- 5
- Founded
- -
- Address
- London, Gb
- Industry
- Research Services
- NAICS
-
Scientific Research and Development ServicesResearch and Development in the Physical, Engineering, and Life SciencesResearch and Development in the Physical, Engineering, and Life Sciences (except Nanotechnology and Biotechnology)
- Website
- myotubulartrust.org
- Keywords
- Medical research funding, Family support and advocacy, Sharing knowledge and information, Building communities.
- HQ
- London
Myotubular Trust Questions
Myotubular Trust's website is myotubulartrust.org
Myotubular Trust's LinkedIn profile is https://uk.linkedin.com/company/myotubular-trust
Myotubular Trust has
5 employees.
View email and phone details for 5
employees at Myotubular Trust.
Myotubular Trust's industry is
Research Services
Myotubular Trust's top competitors are
Mtm-Cnm Family Connection, Inc,
The Queen's Institute Of Community Nursing,
Yorkshire Care Group Limited,
Wilhelm Foundation,
Paladin,
The Lily Foundation.
Myotubular Trust's categories are Research Services
Myotubular Trust's founding year is 2006
