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Rainbow Services Harlow
Is looking to appoint a new Chief Executive
Salary: Circa £40k Based in Harlow Essex
plus car allowance and pension contribution
Could this be you?
Rainbow Services is a well-established charity with an excellent track record of supporting voluntary organisations in Harlow and beyond. We provide information, advice and advocacy as well as a strong voice for local voluntary and community organisations. Operating in an increasingly commercial climate, we work closely with local government, other charities, umbrella bodies and funders to ensure organisational and sector leadership in Harlow.
We are looking for a commercially astute person with a track record in management and successful partnership working with a fairly small staff and volunteer team who continuously aspire to punch above their weight. Your focus will be to build on our existing services, identify unmet need and develop appropriate responses together with supporting income streams that capitalise on our strengths and abilities, whilst rising to the ever present challenges within the VCS.
For an informal conversation please call Jackie Sully (current CEO) on 07896 486441
Closing date for completed applications: 5pm Wednesday 8thth March 2017
Shortlisting will take place in the middle of March and applicants will be informed if they are to be invited for an interview by mid April. Actual interviews are planned for the first week in May.
A few months ago Maddi was diagnosed with an extremely rare disease called SPG15 (Spastic Paraplegia Gene 15) which unknown to us she had been harbouring this condition until she reached 13 years old at this point she started to struggle with walking. Having been quite an active child with ice skating, horse riding etc.
SPG15 is classed as a motor neuron disease but is very rare in fact it appears that there is no one else in the UK this and it is thought to be less than 20 people in the world with this disease type. It is known to develop paralysis in all four limbs, also causing abnormalities of the brain. In addition it affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism.
The disease is taking hold and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly so we can stop it from destroying Maddis capabilities.We have now been contacted by the Gene Therapy research team at Sheffield Institute for Translational Neuroscience who are one of the world leaders in this area of research.They have advised they can research Maddis Gene to work on a form of treatment for her.However, as she is the only one with this disease type, we have to self fund. The amount to continue the research is £224,162.00.We have been fundraising for the last few months and have more or less covered half of this so therefore we are trying to cover the rest asap. The research can be started soon and the aim is if all goes to plan the timescale could be quicker.Any help with fundraising or at least raising awareness would be greatly appreciated. Here is the link to "Save our Maddi" Facebook page.