Project information

Funding the Myotonic Dystrophy Patient Registry

There is no therapy or cure for Myotonic Dystrophy, but this may well change with recent advances in research. The UK Myotonic Dystrophy Patient Registry has a vital part to play in accelerating the transition from basic research to human clinical trials, but is underfunded beyond 31st Dec 2012.

January 2013 - December 2013

Charity information: Myotonic Dystrophy Support Group

Myotonic Dystrophy Support Group logo
  • Need


    The Medical Research Council launched the UK Myotonic Dystrophy Patient Registry in Newcastle in 2012 with the aid of £7,500 from the Myotonic Dystrophy Support Group (MDSG) and £7,500 from the Muscular Dystrophy Campaign.

    A further £15,000 is now required to keep the Registry going throughout 2013.

    In the longer term, the Registry's costs will be subsumed within the budgets of human clinical trials.


    By raising £7,500 towards the £15,000 required to meet the running costs of the UK Myotonic Dystrophy Patients Registry in 2013.

    The UK Myotonic Dystrophy Patients Registry will approach other donors, including the Muscular Dystrophy Campaign, to fund the remaining £7,500.

  • Aims

    Aim 1

    To raise £7,500 to keep the UK Myotonic Dystrophy Patients Registry viable throughout 2013.


    » The MDSG will make an unconditional guaranteed pledge of £1,875 towards the aim, if it is accepted for the 2012 BigGive Christmas Challenge.

    What success will look like

    Success will allow the UK Myotonic Dystrophy Patients Registry to maintain and expand its data base of those affected by Myotonic Dystrophy ready to take part in human trials.

  • Impact


    Progress towards human clinical trials will be enhanced by having access to a data base of volunteers willing to take part.

    This cannot be achieved without the UK Myotonic Dystrophy Patients Registry.

    Maintaining the viability of the Patients Registry through 2013, and beyond, will be essential as the search for a therapy and eventual cure proceeds.

    Research will be delayed needlessly, if this key component is forced to close in 2013 through lack of funding.


    The MDSG has sufficient funds to make an unconditional guaranteed pledge of £1,875. There remains a risk of failing to achieve the £7,500 target if the donations received prove to be less than double the amount pledged. No other risks are foreseen.


    The MDSG will appeal to its 45 volunteers and 500 members, through the MDSG Newsletter and Website, to donate online during the donation phase in order to help meet the £7,500 target.

  • Budget

    Budget - Project Cost: £200

    Loading graph....
      Amount Heading Description
      £200 Administration Printing, postage etc

    Current Funding / Pledges

    Source Amount
    Myotonic Dystrophy Support Group £1,875 Guaranteed
  • Background


    The UK Myotonic Dystrophy Patients Registry is located within the UK Medical Research Council's Centre in Newcastle.

    Founded in 1989, the Myotonic Dystrophy Support Group (MDSG) is located in Nottingham. The MDSG Board consists of 10 all volunteer Trustees, supported by 8 Medical Advisors and 25 regional contact members spread across England, Scotland and Wales.


    Myotonic Dystrophy is the most common form of Muscular Dystrophy in adults. It affects 1 in every 6,000 people, both male and female. Some 6,500 people in the UK are therefore affected by this often devastating and life threatening condition for which, currently, there is no therapy or cure. All 6,500 of whom stand to benefit potentially from this project.

  • Why Us?

    Why Us?

    We have already donated £7,500 this year to assist in the launch of the UK Myotonic Dystrophy Patients Registry. We are the only UK Charity devoted specifically to caring for those affected by Myotonic Dystrophy. We have over 500 members and send our Newsletter to a further 1,500. We have also received over 7,000 hits on our Website so far this year. We have achieved our target this year for the Patient Registry. With your help we will achieve it again for 2013.

    Read more about the Charity running this project.


    Margaret Bowler

    MDSG Chairman and National Coordinator, who will manage the publication and promotion of the MDSG's donation appeal.

    Sue Kelly

    MDSG Trustee, her 8th annual "Evening of Bridge" with supper for some 90 people on 8th November is expected raise £1,500 in donations.

    John Kelly

    MDSG Trustee, his presentation, based on personal experiences in the Falklands War, is expected to raise £250 in donations