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Project information

Lowe Syndrome Children's Charity support office

Lowe syndrome is a rare incurable children's diseaseaffecting eyes,bones,kidneys, muscles and brain.
This is the only charity within the UK helping support families and also raising funds to support vital research. We have no funding and need financial assistance for continuing our work.

January 2017 - January 2018

Charity information: The Lowe Syndrome Trust

The Lowe Syndrome Trust logo
  • Need


    The lack of knowledge of the disease not only by families but also doctors, care homes etc.
    The lack of support to families who have nowhere to go when their baby is diagnosed.
    The lack of research to find better treatments and cure of the disease.
    A better understanding of the disease.
    A website for families and medical professionals.
    A Lowe Syndrome medical
    Booklet explaining the complexities of the disease.


    The project will address all the areas above if sufficient funding to support the general office running can be found. Only one person paid ten hours per week the founder Chair & Trustee who founded the charity has worked voluntary steering the charity for 16 years.

  • Aims

    Aim 1

    The continuation of the Lowe Syndrome Trust


    » Fundraising

    What success will look like

    That the charity can continue supporting families and funding medical research which at present is near potential drug therapy

  • Impact


    Long term aim is to produce a drug to emulate the missing enzyme. This will be demonstrated by our current research teams including Manchester University, Imperial College London and Purdue University USA


    The risks are having to close the office.
    Alternative accommodation would be put into place at my home.


    Email, Facebook, Twitter, letter,media

  • Budget

    Budget - Project Cost: £20,000

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      Amount Heading Description
      £7,200 Office rental Accommodation
      £6,700 Temporary administrator Administrator6700
      £6,100 Office General office costs,telephones,stationery,printing,postage,franking,laptops,insurance
  • Background


    London supporting UK and Ireland


    All Families of Lowe Syndrome and those associated such as medical professionals, schools, hospitals (we devised an A&E form for all families following death six year old Lowe boy in A&E due to the lack of knowledge of the disease

  • Why Us?

    Why Us?

    It is the only charity and during the past 16 years has a wealth of medical information

    Read more about the Charity running this project.



    Administrator to Chair & Trustee