Together we CAN make a difference!

We are a group of families determined to find a cure for our children and grandchildren. We aim to raise awareness of this rare condition, so that vital funds for research can be raised to help find this cure. This is our FIGHT FUND!

We Urgently need to find a cure for ALL forms of Myotonic Dystrophy. Our fund to provide money for research which will benefit CONGENITAL. This is the rarer, more severe form of DM, and we still know very little about it. We hope to help change that.

Congenital Myotonic Dystrophy is not a disorder in its own right, it is the more severe form of DM1 - with symptoms apparent since birth. We aim to support research which is relevant to the Congenital form, if and when it becomes available. We will choose which programmes to support with this in mind.

In collaboration with, and with the support of MUSCULAR DYSTROPHY UK, we have started the fund. Our aim is to raise £50,000 a year, for an initial 3 year period. This will go to MDUK, where it has been ring-fenced to provide funding to the research programme we have chosen. More information on this can be found in our RESEARCH section.

So how can you help? Whether it be a one-off donation or if you would like to take part in an event or challenge, we welcome your fundraising efforts and will support you in any way we can.

Together we WILL make a difference,

Thank you,

Sarah, Sian, Emma-Jayne and Linda.



We welcome your donations, big or small!

If you would like to make a one-off donation, you can do, by visiting our Fight Fund Page on the MDUK page.

Please click HERE to be directed to the page and for more information.


You can also donate on our dedicated JUSTGIVING page. 


Please remember, you can add Gift Aid to your donations, which will give our fund an extra 25p to the £1. Please remember to click the box.



Fundraising! How can you help!

Events or Sponsorships.

We welcome all your fundraising efforts, and really appreciate your support.

Perhaps you have an idea for a small fundraiser? A coffee morning, bake sale, or 'walkathon' - whatever you would like to do, we would love to hear about it.

Perhaps you have a BIG event planned? A gala dinner, or ball? Would you consider having a raffle on behalf of our Fight Fund?

Whatever your ideas are, please get in touch and we will support you in any way we can.



Corporate Sponsorship.

We would be honoured to be your designated charity!

Do you own a company, or work for a company who provides Corporate Charity Sponsorship?

If so, please get in touch, we would love to be your designated charity. We need support from companies, big and small, to help raise these much needed funds and enable research.

We need a cure for our loved ones - can your business support us?

Please contact us.