Congenital Myotonic Dystrophy Fight Fund

Help fund the fight against congenital myotonic dystrophy!

Congenital Myotonic Dystrophy Fight Fund is a group of families determined to find a cure for their children and grandchildren, and to raise awareness of the rare condition of congenital myotonic dystrophy.

What is congenital myotonic dystrophy?

  • Congenital means ‘at birth’. There are other forms of myotonic dystrophy, ‘congenital’ is the most severe form.
  • Myotonic means ‘contraction of muscles’. Myotonia often presents itself in the hands, and is an inability to release grip, due to the contraction of the muscles.
  • Dystrophy refers to the wastage of muscles.

A child with congenital myotonic dystrophy, or ‘CDM’ as it is also known, is often, but not always, diagnosed at birth or fairly soon after. They will likely have spent some time in neo-natal intensive care, with help with breathing and feeding.

Once discharged, the child is likely to have many appointments with different specialists, such as: speech and language, occupational therapy, sleep clinic, cardiology and most importantly a specialist neurologist.

congenital myotonic dystrophy fight fund

Together we can make a difference

The fight fund wants to raise awareness of CDM so that vital funds for research can be raised to help find a cure. The aim of the fight fund is to raise £50,000 a year, for an initial 3 year period. This will go to Muscular Dystrophy UK, where it has been ring-fenced to provide funding to the CDM research programme.

So how can you help? Donating your spare foreign currency to the Congenital Muscular Dystrophy fight fund is a great way to help raise vital funds for fighting CDM.