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 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.
The continuation of the Lowe Syndrome Trust
What success will look like
That the charity can continue supporting families and funding medical research which at present is near potential drug therapy
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 - Project Cost: £20,000Loading graph....
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
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
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