Cure DM grant giving for research and studies

Cure DM strives to support and fund (where possible) research which meets our charitable aims. As a small charity we are not yet in a position to fund full projects, but are happy to contribute where we can.

When deciding to fund a project we must meet the following aims:

To preserve and protect good health among, and relive the needs of, people living with Myotonic Dystrophy, their families and carers, in particular but not exclusively by:

* providing information, help and support to such people and their families and carers;

* making financial donations to support organisations and individuals carrying out research into Myotonic Dystrophy, the useful results of which will be published for public benefit; and

* raising awareness of Myotonic Dystrophy within the general public, medical and scientific communities.

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June 2022 - Cure DM Grant to support:

Multi-centre audit of Myotonic dystrophy care in the UK: Is it the time for national recommendations?

Litesh., et al

Cure DM are delighted to have recently supported 3rd year medical student Mohit Litesh ( working alongside Dr Channa Hewamadduma, Consultant Neurologist in Sheffield) with a grant towards the attendance and presentation of his abstract, for the annual conference for the Association of British Neurologists (ABN).

"I had great feedback from attendees of the ABN and that our presentation has sent a strong message in regards to highlighting not only the short-term improvements one can make when delivering care to myotonic dystrophy patients, but also the importance of other centres also carrying out their own respective audits to help identify the gaps in their care"

The charity regularly supports patients and families who are facing often unnecessary, but continuous, challenges with their clinical care. This is a time consuming, worrying, and serious burden for families and patients, which often those in clinics can not fully appreciate. The condition is still generally not understood within the NHS. Current care recommendations and best practices are not always UK Specific and therefore are not always appropriately implemented. This work will help raise the profile of Myotonic Dystrophy and identify areas where improvements can be made within clinical settings. Reducing the unnecessary stress that is often experienced around their care by those living with this rare disease will ultimately increase positive quality of life. We are very pleased to have been able to support this presentation and look forward to seeing and sharing the full published paper in due course.